I posted a few days ago some of my thoughts on protecting LuLu’s (and the other children’s) privacy vs. sharing our story/struggles. And one of the most wonderful things about adoptionblogs.com is that readers give me even more food for thought. So, I’m still thinking…

Nancy Deren gave some great input on the “person first” movement.

I've seen that language does have an impact on how people are treated. Using negative language reinforces subconscious messages over and over. Because of this, I feel very uncomfortable with lots of the nicknames that people use for their kids that incorporate the name of the disability.

I totally agree. I’ll admit that not very long ago I thought calling a child with Reactive Attachment Disorder a “Radlet” was ok. In fact, I didn’t think about it much at all, mostly because the conversations where it was used were out of the earshot of the children themselves.

But as I have reflected on parenting children with disabilities, I realize how powerful words are. Just this week LuLu’s reading lesson included discussing “sticks and stones make break my bones but words will never hurt me.” Even LuLu understands the universal truth of how much words can hurt.

Labeling your child by his/her disability, even if you just do it in your mind, changes things. It changes the way you view your child and the power you give the disability. Think about the adjectives you use to describe any people in your life, including yourself – “bright”, “sweet”, “fat”, “old”. Each word evokes an emotion, and if used long enough is who that person becomes…self-fulfilling prophesy.

It also allows the disability to loom large over the person’s whole being – and the family’s whole life. In many cases (our family included) it’s hard for the disability not to permeate the entire being of our existence. But, making a conscious effort to not give the disability labels a powerful position in our language helps.

On the flip side, I don’t think we should be afraid of “calling a spade a spade”. And this, too, is a real problem, especially if the disability is mental, emotional, or neurological. I can still hear my parents whispers about the family in our small rural community whose son had Down’s Syndrome when I was a child. No one ever used the term “Down’s Syndrome” then (it was something more derogatory), but it was almost as if speaking the words outloud that there was a disability would bring bad luck and make it contagious. My parents were not being cruel, rude of judgmental, it was just a “secret” topic and one not discussed in public without hushed tones. But the message was that whatever was happening in that family was “bad”, “shameful” and to be hidden. There are still way too many whispers about mental illness, autism, trauma, developmental delays...the list goes on.

So, as aggravating and burdensome as it is, on top of everything else we’re saddled with as parents of children with disabilities, we have to be the torch bearers -- the spokespeople, if you will, for setting the standards of how the world views people with disabilities. The language we use, the frequency and tone in which we speak of our children and their disabilities all influence others around us. Yes, I know that it’s not fair that we carry this responsibility on top of all others. And many families decide total privacy is a good way to protect their children and themselves from having to become that spokesperson or poster child. But then the whispering starts…and that does little to change the way the world views our precious children and the struggles our families face.

Photo Credit