Wednesday, July 27, 2016

And He Said, "Babies With Down Syndrome Look Weird."

We took the ferry over to Kingston the other day, walked along the beach, had some ice cream, it was a great day! As we bought our tickets, I asked the cashier if Beth qualified for the 'disabled discount' (that's the way it was written on the paper) and she said yes. I told Beth that her ticket cost less because she had Down Syndrome and then the cashier told her, "You'll have money left over to buy something else you want because you're special." Beth smiled and said, "Yep!"

I know the cashiers comment would have angered some people but I know she wasn't trying to hurt Beth. She was trying to be nice, nothing more. Maybe she hadn't had many encounters with people with Down Syndrome. Maybe she kicked herself after we left, 'Why did I say that?!' (I think we've all been there.) The way we reacted to it set the scene for the rest of the afternoon. We said thank you and went on with our day.

But her comment reminded me of a situation that happened when Beth was born.

We found out that Beth had Down Syndrome after she was born and I had had a full day of doctors and specialists. The next morning I woke up to my roommate talking back and forth with her doctor. There was a curtain pulled between our beds, but I could hear her whisper, "Does my baby have Down Syndrome?" Her doctor laughed, "Does your baby look weird? Downs babies look weird, you'd know it if you had one."

I froze. I literally held by breath for a few seconds. I couldn't believe what I'd just heard! But then I somehow knew that this was just the first in a long line of comments we'd hear over the years. It was like, okay, here we go, and I knew how I responded to this would set the presedence for the rest of our lives.

I didn't move. I wanted my roommate to think I was still asleep and that I hadn't heard what her doctor said. She went home a couple days later but I never said anything about it. As far as I know - wherever she is all these years later - she believes I never heard that conversation. I do remember one of the days I was holding Beth she told me Beth was beautiful. I hope that seeing me and my family love on Beth showed her that children with Down Syndrome weren't weird and were worthy of love.

And I believe Beth's smile and interaction with the cashier at the ferry terminal showed her that Beth - like everyone else on the planet - is special and worthy of love and kindness.

(Beth is in the long black dress with white jacket tied around her waist.)


Caz said...

Sounds like Beth has learnt from you to handle situations with grace, and to be forgiving of people who are still working towards an understanding of the impact of language, and towards an understanding of how all people are different. I guess one of the things that having a child who is seen as somehow different forces you into is being an ambassador (which you do beautifully through this blog). But then all our babies are special, and we are all ambassadors for our children to some extent. And I feel sure that the image of you holding your loved baby would have far more of a lasting impact than any ignorant words. Anyway, I'm rambling - more to the point, beautiful photographs of a beautiful family x

Unknown said...

I have always said there's a time and a place to educate people. Sometimes nothing really needs to be said and I think the ticket booth was one of those times. I have learned that we aren't going to change every person's thinking and I just don't have the energy or time to constantly be in education mode.

That comment by your roommate's doctor in the hospital is beyond ignorant. But the medical profession seems to have a lot to work on. I don't think I would have been able to say anything either....getting that post birth diagnosis and navigating what that means was hard enough without having to lash out at a stranger!

I think Beth is a wonderful person. I enjoyed talking to her at dinner back in March and if I ever make my way out to WA again I'd love to visit more with her. She is making her own way in life.