I try to not be too sensitive about what others say and believe me, I'm not the type to keep score. I know that we have so many people in our lives who love us and love baby Luke. I believe that people mean well. I have read so much about the importance of utiizing people first language and while I've noticed it not being often practiced, until now I've mostly chosen to ignore it because like I've already said, I believe people mean well and the fact they talk to us about Luke and show concern for his health issues first and foremost, means to world to Dustin and I. That said, I wish everyone knew what it meant to use People First Language.
As we continue to become more immersed in various online and in-real-life communities for individuals with Down syndrome as well as other areas of disability, disablement and delay, I've become more keenly aware of their associated stereotypes. In the few short months that Luke has been a part of our lives, he's been called a "Downs Baby", a "DS Baby" and others just say he's "Downs" amongst other phrases. I don't see him as a downs baby, a DS baby or downs... I see him as Luke. Luke is my precious son who looks me in the eyes while he offers up the most loving smiles. Luke is my son who coos and talks and tells me stories. Luke is my son who is impatient when he is hungry. Luke is my son who goes with the flow... quietly and patiently playing with the toys attached to his bouncy seat while I load the dishwasher. Luke is my other son's brother - someone he kisses, helps us burp by patting his back and someone he antagonizes in the bathtub. Luke is a grandson, a nephew, a cousin, a neighbor and someday soon he will be be a playmate and a friend. Luke is not a "Downs Baby", but rather he is a baby with Down syndrome. Down syndrome does not define him... his personality and future interests will define him. I recently read a similar account by another mother of a child with Down syndrome and she compared it to how we refer to someone who has cancer.... we wouldn't call him a "cancerous man" but instead he would be a man with cancer.
If you're reading this and you've called Luke a "Downs Baby", please don't feel bad - I"m not trying to publically call you out - honestly I don't have anyone in mind as I write this, I just know that it happens so often by people we know and folks we don't know that I feel it's important to help educate. I hope for Luke to feel included in our community as he grows older and I think a part of that will be for others to talk to him as a person instead of a diagnosis.
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