Okay, that title may be a little rough…
We all know that C is Hard of Hearing. However, every year we receive a letter from our state telling us that she is part of a special program for children born with birth defects. Last year, we received it about a week after getting the final diagnosis that C was Hard of Hearing. It was devastating. The wording was even more devastating.
We live in a culture that pushes acceptance towards everyone no matter what their walk of life may be. It is 2018. Yet, right after my baby girl turned one, we received another letter reminding us that she was automatically registered as a child born with a DEFECT and that there are programs that can help us overcome. How many parents in my state are missing the second part of that letter because of what the first part says?
Let me make it clear…
My child is NOT defective.
The dictionary defines defective as “imperfect or faulty”. By labeling my child as one born with a birth defect, the state is saying she is imperfect. That somehow, the fact that she needs aids means she was born “faulty”. It is a hard slap across the face each time I receive that notice. Unfortunately, hubs got this one and so unlike last year, he got the slap. I try to shield him from those terms. Just a generation back in his family, concentration camps were a reality.
It seems to me that with all the labels available out there, some better term for this program could be discovered and implemented. I don’t even need a label past “Hard of Hearing”. My beautiful, precious baby C was born Hard of Hearing and because of it I have discovered a beautiful new language and seen unfathomable amounts of love from our community (some friends are even learning “her” language as well).
My mother was sitting with us and challenged me to come up with different name options for this program.
- Children Born with Congenital Differences
- Children with Different Abilities
- Program to Help Children Overcome Congenital Conditions
I don’t know that I’m the right person to pick that name, though… because I don’t see my daughter as handicapped or incapable. It takes being around a similarly aged hearing child for me to even recognize that she is Hard of Hearing. C is my daughter.
I’m so thankful there are programs out there to help her achieve greatness, but dude… She’s going to achieve that greatness because of the team she has standing behind and beside her. She’s got cheerleaders and we will figure out what needs to be done. The Preschool teacher at our local school is learning ASL so that she will be ready in 3 years! This is the support that we have, and I recognize that not everybody has this support.
However, when we start by labeling someone’s children as defective are they really going to go to you for the support they might so desperately need? I’m not. I don’t even want to call the program, because it feels like I’d be agreeing that C is defective.
Love. Not Labels.
Acceptance. Not Awareness.