#SiblingsDontSuffer from Down Syndrome

The show Emmerdale has claimed that parents should consider the impact on siblings when deciding whether to keep a pregnancy when Down syndrome is likely.

Here are some of the ways that having a sister with Down syndrome has affected me:

• I learned how to explain complex ideas in simple words. This has made me a better writer.
• I grew up respecting my disabled peers. I befriended a few of them and we played at recess.
• Due to her illnesses, I learned the importance of helping when someone gets sick.
• I became good at listening closely so I could understand unclear speech.
• I made money babysitting for many, many years.

Now, as an adult, it still affects me.

• I have become part of a few routines, like daily morning walks and a daily evening Netflix episode.
• These routines require me to follow a somewhat predictable sleep schedule.
• She reminds me to do tasks I tend to forget (like laundry).
• Her enthusiasm pushes me to do things like singing and drawing without worrying if I do a bad job.
• It’s easier for me to notice certain accessibility problems on websites. All I need to do is picture what it would be like for her to try to navigate it.
• I participate in more frequent dance sessions because she starts them.

Does that sound tragic? Do you think my parents should have stopped this from happening to me 20 years ago?

Of course, it’s hard to draw conclusions from a single data point. I’m just one person. That might not be enough.

How a Few Other Siblings Feel

Shelly describes her brother with lots of love. “We are always hanging out, going on vacations, and dancing around the place like no one is watching,” she says. “I always make it a big deal for his birthday.”

Mandie says that her sister “makes my life very fulfilled and interesting. Watch out, this girl will keep you on your toes.”

Dallas enjoys telling silly stories about growing up with her brother.

Morgan’s parents worked a lot, which made it more challenging. However, “I feel that taking care of him growing up has made me more mature and, it made me have a better bond with my little brother.” Morgan wouldn’t change it.

Siblings aren’t the only one who feel positively. Ab, cousin of Tracy, said that growing up spending time with her helped him be a better father.

Of course, now we’ve only heard input from 5 siblings and 1 cousin. That isn’t very many people.

Would you feel better if you could hear from 100 siblings? Could you start to draw conclusions?

How about 500 siblings? That’s a lot. You can definitely learn things from asking that many people.

What if you surveyed 822 of them?

The Research on Down Syndrome and Siblings

Back in 2011, researchers decided to measure experiences of 822 kids who had a sibling with Down syndrome. They gave out 2 questionnaires, one for kids ages 9-11 and one for kids ages 12 and up. Here are a few of the notable findings:

• About 88% thought they were a better person because of their sibling
• Over 95% would not trade their sibling for a different sibling without Down syndrome
• Over 96% felt affection for their sibling

Think for a moment about your average siblings. How many of them would be willing to admit they love each other? How many would say they’d like to trade away a sibling?

In younger siblings:

• 88% weren’t very annoyed by their sibling needing extra help
• 90% thought their friends were comfortable around their sibling
• 91% didn’t feel embarrassed by their sibling
• 97% said they loved their sibling

In older siblings:

• 85% didn’t think they were asked to do too much to help their sibling
• 88% said they were better people because of their sibling
• 93% planned to stay involved with their sibling during adulthood
• 91% thought they had a good relationship with their sibling
• 94% felt proud of their sibling

The kids were also asked what advice they’d give to parents expecting a child with Down syndrome. These results varied, but the most popular theme was that this was a reason to be happy.

The full text is available online.

A few other studies have investigated this too. Way back in 2006, a study found that “siblings find rich value in having a family member” with Down syndrome. Another 2006 study found no real differences in adjustment based on whether a sibling had Down syndrome.

Media Stories

The creators of Emmerdale said they did their research. While I didn’t time myself exactly, I believe it took me about an hour to find all this information. (Half of that was spent going through WordPress blogs. The research papers were easy to find.)

I believe that facts tend to speak for themselves. These numbers tell a clear story about the reality of Down syndrome and siblings.

I’ll simply share a reminder that the way we portray things in the media matters. In matters where we lack personal experience, we use outside influences (like TV shows) to guide us. If these influences aren’t based in reality, then people may end up making choices that aren’t right for them.

I’ve heard stories of parents being pressured to abort a child they want to keep. I’ve heard stories of them being told “I’m so sorry” instead of “congratulations on your new baby.” When we paint Down syndrome as something awful, we fail to give parents the support they deserve. (That’s not even mentioning how it affects people with Down syndrome themselves.)

The stories that we tell matter. I found some facts. You can analyze for yourself what does (and doesn’t) measure up.

The truth is that my sister has changed my life for the better. The numbers suggest I’m not the only one who feels that way.

Why not tell a story about that instead?