Down Syndrome - A Condition, Not A Definition

BlogHer Original Post

Last month was a month devoted to promoting awareness about what Down Syndrome REALLY is. About how amazing people with that little extra chromosome are. About how we’ve spent centuries treating them as if they can’t do anything simply because they do it more slowly & deliberately. Because they look different than neurotypical people. But they’re showing us “normal” people every day that they can do far, far more than we know.

This is my son, Henry. He's 6 years old and has Down Syndrome. He isn't Down Syndrome, he has Down Syndrome. It doesn't define who he is, it's only part of who he is. He's also a 6 year old boy who loves books, farm animals, dancing, laughing, Elmo and lots of other things six year olds love. Unfortunately, many people will not be able to see past the Down Syndrome portion of who he is, which is a shame, because he - and all people who have Down Syndrome - are SO. MUCH. MORE.


Let’s educate ourselves about Down Syndrome & what it REALLY means. It doesn’t mean institutionalizing people. It doesn’t mean they’re “retards”. It doesn’t mean they can’t learn or love or do much of what we all do every day. They go to work. They go to school. They play sports. They love music. They have friends. They go on dates. They’re even going to college & getting married. They are JUST LIKE YOU & ME. From what I can see - here’s the only difference. They do what we do - just a little more slowly & deliberately. It’s not that they CAN’T do something - it’s just that it takes them a little longer to learn how to do it. Having seen the strides we’ve taken in just the past couple of decades, I wouldn’t be surprised to see a future when people with DS regularly drive, live on their own, and do a lot more. Of course, I’m speaking in generalizations, but I see it. I believe it.


Another misconception people have about those with Down Syndrome is that they’re dull. They don’t have a sense of humor and they just sit there with their mouths hanging open and their tongues hanging out. They don’t really *respond* to people - just kind of dopily flop around being completely passive and….well….dull. I’m here to say that’s a load of crap. Let me show you the responsiveness of a 21 month old with DS. Tell me this is a “dull” child.


Isn’t that the cutest thing? Now, let me explain something. You see him doing a lot of licking – his hands and his pacifier strap. Understand why this is – it’s due to sensory issues. Because he has a very high need for sensory input, coupled with being practically blind without his glasses, he uses his mouth a lot to learn about the world and his place in it. If he’s not getting enough stimulation (like skin pressure, spinning, and stuff like that), he tends to lick his hands or his pacifier strap. At the point of this video, we weren’t yet aware of his serious sensory issue problems. But it’s not because he’s DULL or something. It’s because it provides something he needs. People with Down Syndrome tend to have their tongues hanging out sometimes. We see it as “dull” or “slow”. That’s not it at all. It’s because people with DS tend to have smaller mouths and their tongues are too big. Plus, very low muscle tone in the oral area is very typical. Combine those things and unless they’re really concentrating on it, it can simply be difficult to do.


See how it’s all about perception? If you don’t ask the questions in order to understand, you assume the worst. “If he/she wasn’t so dumb, they’d be able to keep their tongues in their mouths – means they’re all stupid.” Wrong. There’s a REASON. Often it can be improved. If not, don’t assume it’s because they’re too dim-witted to know to keep their mouths closed.


You know what I’m realizing? People fear what they don’t know. They treat people with DS as if they’re less-than-human because they don’t KNOW them. They’ve never met a person with DS and certainly don’t know someone like my Henry. So that’s my mission – to help people know someone with Down Syndrome so they won’t be fearful of people with Down Syndrome. They’re people. They like to be treated like it. Talk to them. If you see someone with DS working at your store – say “hi”. Ask how they are. Don’t stare. Don’t whisper. And, hopefully, with every person who does this, a little prejudice will ease up. A little love will spread. Like the Grinch, maybe a heart will grow 2 sizes that day. Do it for Henry. Or Caroline. For Jenni. For Rhett. For Delphine. For Will. For Kayla. For countless HUMAN BEINGS who live like us, love like us and deserve respect & dignity just like us. Thank you.

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