This morning, my husband dropped me off at the airport en route to Hong Kong. This is the first time since the birth of Jason that I had to leave them on their own for so long. It feels weird. I am just leaving them for 2 weeks, yet when I turned my head around after going through customs and found my husband looking out for me, waving goodbye, I felt like crying. In fact, my eyes got teary enough that I can no longer disguise it with a yawn or a sneeze, which i think everybody does. I had to go to the washroom and grab a kleenex to do the job. I know this is silly...but I already miss my family...after only 6 hours of being away from them.
While waiting for my flight at the airport, I felt like I have entered into this void, where there is no one that I care about, nor is there anyone who cares about my existence. I am here, surrounded by people, going to the same destination, wearing the same skin color, speaking the same language. There are so much in common, yet no connections among us. A sudden thought comes to mind. What is life without relations? What is life without love? What if there is no one in this world to relate to, no one to love? I feel blessed that I am a wife, a mother, a daughter, a sister, a friend....that I am living not in a void, but a universe of friends and family where we cherish one another's well being.
If you are wondering what the heck you are doing day in and day out, that you are disgruntled about the sacrifice you thought you've made for your family, now just be thankful that you have one. Be thankful that you have someone you love. It doesn't have a to be a romantic one. Think about your parents, your spouse, your children, your siblings, your best friends, or even your boss. Let's cherish relations. Let's celebrate love. Let's celebrate life.
Jason was born with a rare neurological condition called cerebellar hypoplasia that rendered him multiply disabled. This blog is about the journey that we embarked since his birth, the daily challenges, the valuable lessons he taught us, and the ongoing search for treatment(s) across the world that will give him a better chance in life.
Saturday, November 13, 2010
Saturday, November 6, 2010
Thoughts on "Unable", "Disabled"
Unable
For those of you who have children with disabilities, when someone asks you to introduce your child, what are some of the things you have in mind? I have been in one seminar where parents were asked to do just that. Surprisingly (or not?), 9 out of 10 started by saying "my child has _______(the disorder), he/she can't walk or stand by himself, he can't talk in complete sentence, he can't sit still, etc.....but he is a bundle of joy." Why did we start with what they are unable to do? Well, I never ski, I can't skate, I can't swim, I am afraid of height, I can't even ride a bicycle, but do these "represent" me? Not likely. There are way too many things each of us are unable to do and they have no bearings to our inner soul nor our personal achievement. By the same token, we should focus instead on what our children CAN do, and build upon their abilities. So from now on, think "able", not "unable".
Disabled
Every now and then, there was a revision of the terms used to describe people with various forms of disabilities to reflect the evolving social culture and what was considered socially appropriate. For example, back in the old days, the word "morons" was used to mean people with mental disabilities, which was then replaced by "idiots", and later the "mentally retardated". From current social standard, we would all consider the above terms disrespectful that often came with a negative connotation. The more acceptable term in use now is "intellectually disabled" or more vaguely so "developmentally delayed". These terms carry a relatively neutral meaning, which somehow affect how people think about this group of people which are very often misunderstood.
I appreciate whoever thought of using the word "dis-abled". The prefix "dis" could imply that one was "made unable" by the circumstances, which can be the ailment itself, or simply some environmental factors. Say just ten years ago, when there was no such concept of barrier free community, people in wheelchair would have had trouble going out of their house...not to say taking public transportation. But thanks to the collective effort of a lot of unknown heroes, who advocated for the rights and needs of these forgotten minority, many countries have incorporated barrier free community in their urban planning. So now, we are enjoying facilities such as ramp, automatic door, accessible public washroom, low-floor bus. In fact, for many people with physical disabilities alone, a wheelchair-friendly community is all they need to allow them to live and work independently, with a quality of life and contribution to the society no less than the able bodies.
My dream is that one day, the whole world will be built with people of all abilities in mind, so that the people with disabilities will be "able" to do what everyone else can do and the term "disabled" will become obsolete again, why not?
For those of you who have children with disabilities, when someone asks you to introduce your child, what are some of the things you have in mind? I have been in one seminar where parents were asked to do just that. Surprisingly (or not?), 9 out of 10 started by saying "my child has _______(the disorder), he/she can't walk or stand by himself, he can't talk in complete sentence, he can't sit still, etc.....but he is a bundle of joy." Why did we start with what they are unable to do? Well, I never ski, I can't skate, I can't swim, I am afraid of height, I can't even ride a bicycle, but do these "represent" me? Not likely. There are way too many things each of us are unable to do and they have no bearings to our inner soul nor our personal achievement. By the same token, we should focus instead on what our children CAN do, and build upon their abilities. So from now on, think "able", not "unable".
Disabled
Every now and then, there was a revision of the terms used to describe people with various forms of disabilities to reflect the evolving social culture and what was considered socially appropriate. For example, back in the old days, the word "morons" was used to mean people with mental disabilities, which was then replaced by "idiots", and later the "mentally retardated". From current social standard, we would all consider the above terms disrespectful that often came with a negative connotation. The more acceptable term in use now is "intellectually disabled" or more vaguely so "developmentally delayed". These terms carry a relatively neutral meaning, which somehow affect how people think about this group of people which are very often misunderstood.
I appreciate whoever thought of using the word "dis-abled". The prefix "dis" could imply that one was "made unable" by the circumstances, which can be the ailment itself, or simply some environmental factors. Say just ten years ago, when there was no such concept of barrier free community, people in wheelchair would have had trouble going out of their house...not to say taking public transportation. But thanks to the collective effort of a lot of unknown heroes, who advocated for the rights and needs of these forgotten minority, many countries have incorporated barrier free community in their urban planning. So now, we are enjoying facilities such as ramp, automatic door, accessible public washroom, low-floor bus. In fact, for many people with physical disabilities alone, a wheelchair-friendly community is all they need to allow them to live and work independently, with a quality of life and contribution to the society no less than the able bodies.
My dream is that one day, the whole world will be built with people of all abilities in mind, so that the people with disabilities will be "able" to do what everyone else can do and the term "disabled" will become obsolete again, why not?
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