No She is NOT "Downs"

If you are part of the community of families who love someone with Ds, you've no doubt heard all kinds of misdirected comments about your child, many of them from medical professionals.  And very likely, even when your child is healthy there are still many reasons to visit doctors and specialists.  Cue the comments about "Down's kids", how "they" all are, and sometimes you even hear some doozies that really hurt. 

When Cora was in the hospital we had a nurse that really raised my hackles.  Close to jumping up and defending my daughter from what I am sure was just careless phrasing, I decided instead to take the opportunity to try and educate, and just sent off a letter to the pediatric director at the hospital.  I have no idea if it will even be read very closely, or if it will make any kind of difference.  But I would love to do my part to help raise awareness, a little bit at a time.

Here's a peak at my letter.

Dear Director:

My daughter was recently admitted to your hospital. What began as a routine tonsillectomy and adenoidectomy for a 13 month old ended as a readmission for dehydration, subsequent respiratory distress and a PICU stay for aspiration pneumonia secondary to swelling. It was a very stressful experience, but we are very grateful that our daughter experienced excellent care during this health crisis and is recovering very well.

My intention in writing this letter, however, is to share something with your staff that is very important to me. After my daughter was diagnosed with Down syndrome shortly after birth, I learned of the importance of using people-first language. This means referring to an individual as a person first and their disability or diagnosis second. My daughter would simply be referred to as a “child with Down syndrome” rather than a “Down’s child” or “a Downs.”

One recent experience has stood out for me, although it was not the first or last time a health care professional has used this type of language. Upon readmission, Cora’s nurse commented with surprise, “Oh! She’s Downs.” I could not understand the medical relevance of that remark and it was so hurtful perhaps because there did not seem to be medical relevance. The defensiveness I immediately felt unfortunately lingered throughout our stay. These types of statements are dehumanizing and imply that my daughter is simply the sum of her diagnosis, rather than a valuable and cherished member of our family.

Moreover, the correct terminology is Down syndrome or Ds and is not Down’s. While it may seem like a small detail, using the correct medical terminology is important, especially when used in a medical setting by medical professionals.

In the relatively short period of Cora’s life we have learned much about the stereotypes faced by people with Down syndrome. While we are aware that her diagnosis has had an impact on her health, she is a vibrant and healthy girl. She does not “suffer” from Down syndrome and she certainly does not fulfill all the stereotypes about people with Ds, neither socially nor medically.

Even so, we know that she will likely need additional medical care in the future and we intend for her to continue as a patient at Randall Children's Hospital. Your hospital has cared for her in the NICU, during her successful open heart surgery and during her recent stay. We are grateful for the wonderful care she has received.

But we would love to be able to play a role in making the environment at your hospital just a little more hospitable toward individuals with disabilities and their families. I would be honored if you would allow this letter to be shared with your staff or to be used as the impetus for training in people-first language.

Thank you Grammi for the adorable new onesie and headband!