Saturday, November 12, 2011

I Said it Today


I said, "My daughter is disabled."

Up until now, I've only said, "My daughter has a disability," and only occasionally, when needed. It wasn't a conscious decision at all, just how it's been so far. I never thought about the words at all until the ones above came out of my mouth tonight.

It was a bit of a shocker because, when I look at her, I don't see a disabled child. I see my beautiful child, who is wonderful and very capable, and living a normal, well, mostly normal, life, who just happens to have been born with a birth defect. But partway though the big IKEA store we were in tonight, she said, "Mama, my feet tired," which means they are starting to hurt. And I didn't have the stroller or a cart. Then, the medical device she wears started coming loose, which can be noticable, and it was, thus having a brief conversation with another mom that brought out the above sentence.

Sometimes I want to shout out all the details of my daughters condition from the rooftops, put it all out there, sometimes for support, sometimes for empathy or even sympathy, sometimes to explain the odd things we occasionally do, or to educate others, get help, find resources, or just plain to get it out so I don't have to remember who knows and doesn't know so I can remember who I can talk to about things once in awhile.

But the bottom line is that this isn't my decision. It's my daugher's. Until she is old enough to decide how she wants to handle it, I feel a deep responsibility to respect and protect her right to privacy. Meanwhile, I encourage Jie Jie to do all she can, while I learn where her real limitations are, if they can be overcome, how best to go about it, all while enjoying her to the fullest extent possible.

3 comments:

karen said...

Personally, I don't like the term "disabled" It makes you think that the entirety of the child is "un-able". It's such a different mindset than "has a disability" which encompasses only one aspect or two of the child's body.
One of my best friends has two adult children with albinism. The first time I recognized the difference in the language was when I said, "Your children are albinos." She quickly corrected me and said, "NO! My children have albinism. To say they are albinos would mean that albinism defines who they are, and they are NOT defined by albinism".
I have always remembered that, and it stuck with me in my way of thinking.
I also, do not personally like the term "Handicap" because I learned a long time ago when I was in a SN class about children, in college, that the term Handicap comes from the olden days when people with disabilities had to stand outside and beg for money (Cap-In-Hand) in order to survive.
Both disabled and Handicapped seem so derogatory and defining of the person instead of the difference, when you TRULY think about it.
If my child had a disability, for her own terminology, that would be exactly what I would refer to it as, "a disability" nothing more. Words can be a powerful thing in defining who we are.

Karen said...

I know what you mean though, about using the "word" Took me forever to use the word "orphanage" without wanting to choke it back.

Nicole said...

"My child has a medical condition," also works in similar situations.