I don't want to offend anyone. It's funny how we say that followed by a giant "BUT" meaning that we most definitely will offend someone. Truly, that is not my intention with this post, but something really rankles me and I need to speak to it.
Twice in the last few weeks, I have visited blogs of adoptive parents. They have both adopted children with Down syndrome, which is fantastic! They are both amazing women and wonderful mommas. I have great respect for them. (here comes the "BUT"...are you ready for it?)
But, they both refer to their children with Ds as "downsies". Just writing it out raises my blood pressure. I tried seeing it from their perspective. I understand that they view it as a term of endearment. They obviously love these kids. They are smitten with the characteristics that make them unique. They use "downsie" as a pet name for their cherished children.
The problem with pet names, however, is that they often make the designee seem like, well, pets. It puts these kids in a separate, cutsie category from the rest of the family, even the rest of society. It makes them seem slightly subhuman. Even with the best of intentions, calling children with Down syndrome "downsie" sounds condescending and even demeaning.
You may think I'm over-reacting. Perhaps I am, but imagine if these same families (both white) had adopted children of another race. What if they, loving the characteristics that make their new kids unique, chose to call them "darkies"? Would that be acceptable? Does that make you cringe as much as "downsie" does me?
One problem I have with this terminology is that I have found that there are two camps in the general public when it comes to attitudes about Down syndrome. There is the "burden" camp: those that believe people with Ds contribute little to society, are a burden to their surviving siblings when the parents pass on, and that it's even irresponsible to carry a Ds pregnancy to term. That camp deserves a post of their own.
The other camp is the one that's pertinent to this discussion. It's the "sweet" camp, as in, "Ahhhh, they're so sweet". Of the two, I prefer this one, but neither are accurate. People with Ds experience the whole range of human emotions and attitudes. Eon is alternatingly sweet and crabby, easy-going and stubborn, happy and mad, just like the rest of us.
"Downsie" sounds very much like it came from the uneducated sweet camp. I know of self-advocates, young adults with Ds, who are struggling to be taken seriously. They have to overcome unbelievable obstacles to earn the respect typical people are afforded at birth. Parents who call their children "downsie" are perpetuating the stereotypes that are limiting these individuals. In so doing, they are limiting their own children and decreasing their potential. They are also limiting my child.
The other problem I have with this label is that it shows that these moms, as awesome as they are, have not spent a great deal of time immersing themselves in the Down syndrome community. I wish they would. They would quickly learn about "people first language" and correct terminology, but more importantly, they would have instant support and answers for questions about medical problems, IEPs, best toys, behavioral issues, nutrition, speech/language, therapies, potty training, etc. That would be the best for their kids. They wouldn't have to rely on the, often uninformed, medical community for answers. We in the Ds community would benefit from their ideas and input, as well.
One day, I hope to join these women in adopting a child with Ds. But please note: That child may have Down syndrome, but will also have the same respect, status in the family, and unlimited potential as his siblings. While we will love him dearly and, I'm sure, find him incredibly cute, he will not be a "downsie".