This is actually a post about People First language….
Again, like a lot of what we have learned along this journey with Joey, I had not thought about People First language before he came into our lives. I certainly don’t expect our friends or family to have thought about it either. However, now that he is here, it’s become really important to me for people to see Joey as a person first. An innocent and precious baby. Not a diagnosis and not a label. Oh, I struggle… do I say something? Do I correct people? Sometimes, sometimes not. If I ever do say something, please know that it’s out of love—and respect. Both for you and for Joey and anyone else like him.
It’s really not that complicated. To me it means not labeling or identifying someone with their difference first. Ultimately, a diagnosis or descriptor shouldn’t really be necessary at all.
Once I thought about it this way, it made so much more practical sense—you wouldn’t say, “Well, menopausal mom called today and wanted to know what you want to do for your birthday.” You wouldn’t say gout Sally, deaf Grandpa or one testicle Uncle Bill —mostly because that would be impolite and might hurt Uncle Bill’s feelings.
People first. It’s just good manners, right? It’s about putting the person before the disability or difference. Ultimately, it’s really about being polite and considerate of the person.
It’s not Down syndrome Joey—it’s just Joey. It’s not a Downs baby—it’s a baby.
Things I’ve learned:
- · It’s Down syndrome rather than Down’s syndrome
- · People with Down syndrome should always be referred to as people first. Instead of a “Down syndrome child” it should be a child with Down syndrome.
- · Down syndrome is a condition or a syndrome, not a disease.
- · People “have” Down syndrome, they do not “suffer from” and are not “afflicted by” it.
- · An “intellectual disability” is preferred to the term “mental retardation”.
So, in this adventure of learning and educating myself while also trying to advocate I sometimes tread into the scary waters of speaking up and practicing some of these things I’ve been learning. My latest effort was correcting a person who lives in our neighborhood who I ran into when I was trying to enjoy a girls’ night out. While catching up at the bar, she said she heard I had a “Downs baby” and then she asked if I was “doing okay” with that. I had just ordered my glass of wine, but she had clearly already enjoyed hers. I tried in the nicest way possible to say, “Well, Joey is a baby who has Down syndrome.” And then in my super sober state I tried to explain people first language to her. That’s when our mutual friend Adam spoke up sensing that my efforts were in vain and that the situation was getting increasingly awkward and pointed to his boyfriend and said, “I still call him gay Rob sometimes.” Thank you for breaking the ice for me, Adam! One step forward…two steps back…
The adventure continues.