pity

I have a nephew.
My cousin gave birth to Obi in the winter last year, and I was able to visit him and his mother in the postpartum ward, peering at his little pink face, all wrapped in a towel, through the glass that partitioned the sleeping babies from visitors.


I've had the pleasure of visiting Obi a few times since his birth. He has completely stolen my heart with his giggles, snuggles, and smiles. And I know I'm not the only one. Obi has grown to a handsome, fun-loving, joy-filled, dashing little boy. All things loveable and loving, he is quick to give out smiles and hugs, charming all who meet him with his symmetric dimples and perfect little teeth. He lives a flourishing life with loving parents, a skilled nanny, doting grandparents, and adoring aunts and uncles. In Chinese we call his name 亮亮, which expresses the shining, bright light which has pierced all of our hearts when he came into the world.

Obi has albinism.


When the quavers of the initial shock rippled its way throughout our extended family, we all reached out as best we could to hold up our loved ones through the process when things in your family don't go as you've planned. Then the storm passed and gave way to the clear, sunny skies of Obi's smiles and giggles, and I thought all was well, as could be well. Everyone loved Obi, and his dedicated parents were committed to do whatever would be best for him.

But it doesn't stop there. This past weekend I went to visit my grandma and on more than one occasion the mention of Obi would bring about this reaction: "好可惜" -- what a pity, with a sigh or a slight shake of the head. The first time I heard it, I could only give a sympathetic smile while I inwardly rebelled. Then I heard it again and again, and the more I heard it, the more unhappy I became.

In our world, the hold of each culture's ideals is strong. We wish for health, security, success. But things happen outside our control because we are finite beings, and those who do not measure up to those ideals are either marginalized, pitied, or a blend of both. And yes, when we see such an energetic, happy, handsome baby as Obi and think about the struggles he may face in the future, of course we have feelings of pity for him. But Obi cannot be defined by his difficulties, just as we are not.

The words "可惜" are used when milk is spilled, or when a bunch of green vegetables is left to wither away for more than a week in the chiller compartment of the fridge, or when a useful piece of dishware is broken. They are used when a good coupon expires, or when a congenial couple breaks up. It's a pity. What a pity.

To me, in these words, there is a sense of waste. The milk, the veggies, the dish, the savings, the chemistry -- something good is gone. There is something shameful in it; the full potential that was left unreached. But if we use these words on a yet ungrown child, the words cast a barrier in front of him -- they assume he can never reach his full effectiveness. That he will never experience life fully. In a sense, he will never be fully human.

I want to refute these words and the ideas behind them. Obi is not one to be pitied. There is nothing shameful about his condition. He is a precious, precious being, and God willing, he will grow and mature and reach his full potential -- not the predetermined ideals set by society, but develop into the person that he alone can be and do the things that he alone can do as an individual. Who is to say he will not or cannot be a great person?

 To me, he already is.



I write this as much for myself as for all out there who encounter special needs in their lives. As much as I am for advocacy, intervention, and integration, there can only be so much that parents, educators, and specialists can do. Without love and acceptance from family, friends, and community, it will only be so much harder, in spite of the technology, the therapy, the research. We cannot turn a blind eye just because they are different from us. This is why I am so glad that our school has chosen to partner with ministries such as Taiwan Sunshine and the special needs school in Ren Wu district, connecting our students with other students who may not look, act, or communicate the same way that they do, but reaching out to discover the same joys and graces that God bestows upon us in this world.

So let it not be a pity. Let them be empowered.