Five years ago, my husband’s brother and his wife had their first child. It came as a surprise to them that their infant son was diagnosed with Down syndrome after his birth. They’d had no reason to expect it. Risk factors including “advancing maternal age” and “already having a child with Down syndrome” didn’t apply to them.
Risk factors. It seems ludicrous to type those words in regards to a little boy whose playfulness, giggles, and authentic connection with others truly make the world a better place. Risk factors for a blessing like him?
Since my nephew’s birth, our family has become more sensitized to disability issues. We have attended fundraisers for advocacy organizations. We notice the way people with intellectual disabilities or other special needs are represented in the media. None of us toss off the “R” word — and we happily embraced the recent “Spread the Word to End the Word” campaign to render that hurtful word obsolete. (See r-word.org for more.)
Although my four children are “typically-developing,” I felt an even deeper kinship with my brother-in-law and sister-in-law after the birth of their son. We had something new in common; like their family, mine is “different.” How does being a multi-ethnic family relate to having a child with special needs? Both of our families see the world in new ways since our “different” child arrived. Their family notices when a person using a wheelchair can’t get around a corner or into a building. And yes, the “R” word feels like a kick in the stomach to them. Similarly, I am offended in a much deeper way than before when I hear people make derogatory comments about people of color.
Parents of children with Down syndrome are aware that when others see their child, many times the first – and perhaps only – thing they focus on is disability. That’s one reason why dismissive words such as the “R” word are so hurtful; they work to reduce multifaceted people into one negative descriptor. When people use racial slurs, the insulting language objectifies the person to whom they refer.
And, after adopting my Guatemala-born daughter, my views on race have changed. I’ve learned that race does, in fact, matter. I’ve learned that even when they insist they are, people are not color-blind. I have come to see that for people who aren’t white in our culture, race is a defining element of life. Being white is a ticket or a membership pass; being a person of color counts – too often – as a strike.
When I hear people make offhand or patronizing comments about the Hispanic men who mow their lawns or when they mockingly imitate the Spanish accent of the person clearing tables at a restaurant, I think, “Is that what you see when you see my beautiful daughter? Do you think of her as less than she is, too? Because of her race?” Having a Latina daughter inspires me to respect the worth of every single person and to seek to know more about someone who is different than me.
I have learned how rich that can be.
