“We are more alike than we are different,” writes Kayla McKeon, an essayist on the National Down Syndrome Society website about what she wishes people knew about her and others with Down syndrome. “We have the same wants and dreams as anyone else. We can do anything anyone else can do.”
Not everyone has caught up to that reality, however, and although Down syndrome is the most common chromosomal condition in the United States, it occurs in only one in 700 babies born in the United States each year. There’s an estimated 400,000 people in the United States with all the interests, dislikes, strengths, hobbies, and irritating habits that make each of us distinct. As we celebrate Down Syndrome Awareness Month this October, that’s the first thing to recognize: Prejudice can really get in the way.
So shove it aside and take in some of the facts about Down syndrome that those who have it wish you knew.
Down syndrome is not a disease, nor is it a condition to be cured. There’s a long, shameful history of names associated with people who have Down syndrome that thankfully have been rejected. In the here and now, you can find a host of helpful language guides, like this post on the Global Down Syndrome Foundation website, which points out that the person should always come first—that is, rather than leading with the condition (“Down syndrome kid”), you lead with the human (“kid with Down syndrome”).
As simple as that. You might see “afflicted with Down syndrome” or “suffering from Down syndrome,” but those words misrepresent the condition. It’s not something one suffers, like a disease, but a genetic disorder—three copies of chromosome 21 where two copies more typically would be. That third copy of the chromosome often leads to medical conditions that do cause suffering and may be treated. Down syndrome itself simply is or isn’t, however.
Age doesn’t matter—at least not as much as many people think
One of the common misconceptions about Down syndrome is that it’s associated with older parents. The reality is that the average age of parents of a newborn with Down syndrome is 26. And 80% of parents are under age 35.
Forget, too, the idea that life expectancy is hugely shortened by Down syndrome. That was certainly true in earlier times of addressing the condition, when children were put into institutions where life was especially challenging. The average life expectancy then (and “then” means the shockingly recent early 20th century) was an abysmal nine years. Today, when people with Down syndrome grow up with their families and are welcomed into schools and communities and workforces, the average life expectancy is 60 years.
Language matters, part 2
Humans are awkward in general, and especially awkward when facing the unknown. Meanwhile, parents to a baby with Down syndrome are adjusting to a reality they may not have expected. The Rocky Mountain Down Syndrome Association offers a great guide for keeping your foot out of mouth when addressing news of Down syndrome. Some points to note:
- “I’m sorry” assumes that the condition is grim or that the parents need pity. Love and acceptance go further.
- “They’re such loving/happy children” builds on a stereotype that is damaging to viewing individuals outside of the condition. Parents of kids with Down syndrome will be happy to explain to you that their children get just as stubborn, upset, prickly, and every other emotion as any other kid.
- Better responses include the classics: “Congratulations,” “They look just like you,” and “I’d be happy to babysit” are certain to be warmly received.
Feeling like you don’t belong is a bummer, no matter the reason. For people with Down syndrome, fighting expectations and being defined by a condition aren’t especially fun. People with Down syndrome build homes, start businesses, fight for social change, set records, fall in and out of love, fail to break bad habits, watch ridiculous amounts of TV, eat too much chocolate, and all the other crap and wonder that goes along with being human. October is as great a time as any to push out any Down syndrome stereotypes that might be lingering in your noggin.