What Not to Say
I am about to address a common tendency that has left my husband and I with a blended feeling of sadness and to be honest, irritation. Hopefully my words are received as intended; clothed with love, respect, and a desire to provoke positive change. This message is offered in full awareness that our community has the best intentions and biggest of hearts. Please meet me here with grace. If we both approach this topic with defenses down, I believe there is a great opportunity for promoting deeper understanding far beyond our circle.
There has been a common occurrence in our conversations, to which I am referring to as: The nameless name drop bucket. This is where, in attempts to relate, people around us want to share that they knew someone, who knew someone, who was related to, or went to school with someone, who had Down syndrome. That is the 'nameless name drop' part. The bucket comes next, when my child and the person referred to, get simultaneously thrown into a overgeneralized bucket. It often concludes as follows: '...and they are just the nicest!'
Here is the problem: that person is not my daughter- or my other daughter. That person, has a name and I would love to hear more about them, get connected or introduced even, but I would not like these individuals thrown out in conversations as if they are crystal balls showing the future of how my children and our life will be. My girls have already at day of life 36, made it clear they are as capable of individuality, personality and a wide range of emotions as my children without an extra chromosome.
I am delighted that so many people encountering a person with DS have had a positive experience. My hope however, is that after you meet our lovely girls, if they come up in conversation, you will refer to them by name, not syndrome.
If you allow me to offer an insiders take, I'd impress that any comments grouping individuals with Down syndrome, are hurtful, even if they are grouped by a positive characteristic.
Consider yourselves warned. If I hear the words: "I have a friend, who has an uncle, who has a brother, who has a dentist, who's daughter has Down syndrome," I will be responding as follows: 'What is his/her name?' and 'Can you introduce us?'