When normal ain’t normal…

Is it just me, or has their been an abundance of news stories as of late relating to individuals with Down syndrome? These stories are getting a lot of attention in social media circles…but for (what I think) is the wrong reason.
Today we had this piece floating around…garnering a lot of “LIKES”:

Meet Madeline Stuart

My first reaction upon seeing this headline was “Great!”.

Then I got to the part where the mom says she wants people with Down syndrome to be seen as “sexy”, I cringed a little. I think it’s great to represent and mainstream individuals with Down Syndrome. Increased media exposure helps our society adjust to seeing these people as just normal folks. Seeing these same individuals as sexy bugs me a bit because of consent. I call my daughters “beautiful”, but not “sexy”. It becomes creepy like a pageant mom to me at that point. Just me.

I do think she’s a beautiful girl, I love her confidence and fearlessness. I hope she gets tons of wholesome, catalog work.

Many individuals with Down syndrome are vulnerable throughout their lives. To see them as “sexy” is just a whole new way to objectify them and perhaps victimize them.

Another piece making the rounds the last few weeks was this seemingly sweet headline:

Pennsylvania QB take friend with Down syndrome to prom

What kind of monster wouldn’t find this story endearing and sweet? Well, me. A little.

What this boy did is nice. It’s not heroic. It’s not so out of the realm of “normal” behavior that it warrants national attention, is it? I’m irked that being a decent human being has become exceptionalism in our society. This girl didn’t have ebola. He knew her since childhood. This story reminds me a bit of this “news” item that went around last year before the holidays about the cop who gave a homeless man a pair of boots. How heartwarming. A policeman does something kind. Shocking!

That ain’t news folks. That’s what should be expected. Kindness. Humanity. Helping others. Thinking of the needs of others.

When each person with Down syndrome goes to prom, or graduates high school, makes the swim team, or does something completely normal and it’s national news, we are missing this point of acceptance and inclusion. Sure, these are great moments in anyone’s life, and yes, I know how hard this little girl worked to make the cheerleading squad (as did all of her older sisters), but when we put them on a pedestal and award them with (albeit fleeting) fame, we make it seem miraculous that they were able to accomplish this.

Now try to convince people that your child with Down syndrome is really just like everyone else.

Didn’t your prom photo get 27 million likes?


That’s not how it works. That’s not how any of this works.

Today I unfriended someone who was never a friend. I never knew Sue, have never met her face to face. We just have several mutual facebook “friends”. Somewhere at sometime, we became facebook friends. This reminds me, I need to go through and thin out the ‘friend’ list to remove those I don’t really know know. What was I thinking?

But I digress.

Like religion, politics is one of those things you need to figure out for yourself in life if you can really and truly commit to it. I’ve voted for pretty much any party you’ll see on a ballot at one time or another in my life. I’m now some limbo-dwelling Independent, who hopes for the best, tries to “judge” politicians as individuals, and mostly keeps her eye rolls and beliefs to herself. I don’t care for folks who are spouting off their political viewpoint any more than I care for religious people who are constantly bringing up their personal faith. These things are just diversions and crap people like to fight about, and really believe that the other side is evil, and only they have the solution. “Don’t believe us?” You’re either ruining this country or going to hell. Sometimes, if you’re particularly egregious, (i.e. gay, or in a teacher’s union, for example),  the fact you are going to hell is also ruining this country.

I’m not anti-religion or anti-government, I just believe civility begins by avoiding conflict. I like peace, what can I say? I like to think about things a lot, and talk about them a little.

So when Sue came up on my personal facebook feed today, I was taken aback by the term “libtard”. Obviously, this is their poor taste attempt and mocking left-leaning individuals, and lumping them in with the now-deemed uncool word “retard”. As though they are mentally deficient to hold their political views. Fine. I get it. “Teabaggers” is nasty too, and makes me cringe a little because of my previously stated thoughts on CIVILITY.

But the word “tard”, or “retard”. Ugh. Why? Why pick the one marginalized group in our society that cannot defend themselves and mock their disability? Oh, because you don’t mean one person in particular, you are dehumanizing everyone with your speech! Touche!

Calling someone a “retard” or another witless form of that, (celebutard, Biebtard, etc.) is mocking individuals like my daughter. You are implying that her opinion and personhood have little or no value. In short, people like her are a joke to you…so just combine the suffix “-tard” with a group or people you wish to ridicule, and let the hilarity commence! How fun!

So here goes. I only post one comment, then unfriend her, but facebook still sends me updates when someone posts to this thread.

I hope William isn't being sarcastic, but I'm feeling gun-shy at this point.
I hope William isn’t being sarcastic, but I’m feeling gun-shy at this point.

So Sue is conservative. She was once affiliated with the Libertarian party, which is why we have mutual friends. She once ran for MN Governor as a Republican. She has a local radio show. But now that William DeBerg has mentioned “libtard” is offensive…someone else is bound to call this out, right?

Let’s continue…

...and the attacking of the William begins. Why?!
…and the attacking of the William begins. Why?!

Now William is admonished to get over it. Apparently his feelings don’t matter in this. Hopefully he’s unfriended Sue by now too. And I don’t know you, but Sue Dettmann Feifert, are you raising bullies? How could you feel so slighted and annoyed by his comment that you are offended? You feel like you’re in junior high? Pure hyperbole nonsense. Gary calls him a skirt and panty wearing man, which we can only see as a slam on his sexuality. MEN don’t get offended by nuttin’.

Surely someone in this feed has sense?
Surely someone in this feed has sense?

I resisted preaching; pasting in something like this long post. Instead, I just wanted to say “Hey, it’s offensive, here’s more about that.”

Why yes, Jeffrey, I AM in fact offended by the n-word. I don’t know that Al Sharpton uses that word, but I don’t really pay much attention to him. It’s a horrible word. Since you brought it up, I’m glad you caught the similarity, because they are both hate speech. More importantly perhaps, show some civility.

Sue Dettman is back to remind us we’re wimps for being offended and faking offense for attention.

I unfriend you.

Happy Monday.

That uncomfortable feeling…

Every day I search the news via google for stories relating to Down syndrome. For months now there’s been the news that there is now a simple blood test, done early during a pregnancy, that can detect Down syndrome with 99% accuracy. I’m all for testing, if it allows the expectant parents time to prepare and learn all they can about Down syndrome.

However, I do have a problem with headlines like this: “Blood Test Can Defeat Down Syndrome” . Huh. Really? Get the blood test and BAM! Cured!

No. It’s not a cure defeating the syndrome. It’s based on the notion that never again does anyone have to give birth to a child with Down syndrome.

This makes me sad. How can advocates and caregivers like myself keep banging the drum and chanting our mantras: “They are more alike than different! They matter! They are great people who happen to have an extra chromosome! They can do anything!” while the medical community is basically saying, “test early and terminate…it’s not worth the hassle.” How can we keep pushing for the rights of individuals with special needs, while so many are saying they shouldn’t even be born: that their lives are somehow worth less than a “normal” baby?

You can say you’re for the rights of those with special needs, but they will never be equal as long as terminating them out of existence is an option.

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Ending Down syndrome abortions

This blog entry is my off-the-cuff response reply to this op ed in the Times today: 

Today the New York Times offered up an editorial called “Outlawing Abortion Won’t Help Children with Down Syndrome”. A title like that is sure to draw me in, being both a parent of a child with Down syndrome and a resident of North Dakota.

North Dakota has one abortion provider in the entire state. Continue reading

Meet Karen Gaffney

What an exceptional woman! Yet again I come across an amazing individual who happens to have Down syndrome, and am reminded of the unlimited potential and bright future ahead for my youngest daughter!

Remember parents, (or parents to be), your child may have Down syndrome, but what is to stop them from having a wonderful life full of amazing accomplishments? Nothing seems to be slowing Karen down. Push your child. Expect great things. Love life!

Thanks, Karen.

WDAZ interview

I finally got a copy of my interview from earlier this month uploaded to youtube. My very first time on television–I ended up not being as nervous as I thought I would be! I’ll be ready for Leno before you know it…

Rock Your Socks!

Down Syndrome International invites everyone across the world to wear LOTS OF SOCKS on 21 March 2013 to raise awareness on World Down Syndrome Day (WDSD).
We want to get people talking about WDSD on 21 March, and we can do this if we all wear socks…BUT NOT JUST ANY SOCKS…brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3 chromosomes. Or if you don’t normally wear socks then wear them. Just so long as they are socks which people will ask you about.
AND WHY STOP AT SOCKS? Wear brightly colored clothing if you like, say if it’s too hot for socks. The choice is yours, but we ask you to join us in wearing something which will help tell the world about WDSD.
It is easy to do, so whether you are at home, nursery, school, university, work, play, travel, holiday or anywhere, join in!
On 21 March 2013, wear LOTS OF SOCKS and invite all your friends, family and colleagues to do the same!

Eating panda

Fact from the Down Syndrome Association: 1 in 691 births in the United States are affected by Down syndrome, making it the most frequently occurring chromosomal condition. Yet despite its frequency, Down syndrome is the least funded of the conditions serviced by the National Institutes of Health receiving approximately $17 million out of a total $28 billion budget.

A few years back, BBC presenter and well-respected naturalist Chris Packham drew serious heat when he said he would “eat the last panda if I could have all the money we have spent on panda conservation put back on the table for me to do more sensible things with.”

Meet Rafe…

Today I had the pleasure of learning about a young man named Rafe Day, who works as a lab technician and “parts dude”  for a research lab at the University of California, Irvine. (Nice feature profile of him here: http://www.uci.edu/features/2010/03/feature_day_100308.html).

Rafe has also participated in the NASA-sponsored Student Aircraft Research Program. (Article here: http://www.nasa.gov/centers/dryden/education/rafe_day.html).

There’s even video of Rafe operating the Whole Air Sampler on NASA’s DC-8.

Technician Rafe Day – also known as the “Parts Dude” – prepares for an air sample analysis using liquid nitrogen in chemistry chair Donald Blake’s lab. (Michelle S. Kim / University Communications)

His friend Jane emailed me today to share a bit of his story. She described him as one of the most “insightful people” she’s ever met, and a “joy to have in our group”.

After reading about him, I’m sure you’ll agree, he has accomplished much in his life, and really touches the hearts of those he comes in contact with…oh, and I didn’t mention it, but Rafe has Down syndrome.

Rafe should be a reminder to every parent of a child with Down syndrome; keep your chin up and never stop believing…the future for individuals with Down syndrome holds unlimited opportunities, no matter what you may have heard.

Just reading about this young man made my day! Sounds like he has so much to offer and great people surrounding him. Quite inspiring!

Something Is Rotten in the State of Denmark

Uck. Saw this on a random website and I really hope it’s not true:

“…Denmark proudly proclaimed that it would soon be the first Down Syndrome-free nation in the world. Its official Web site stated:

“A medical review from 2002 of elective abortions in the UK and the US found that around 92% of all fetuses diagnosed with Down Syndrome were aborted. In Denmark, medical experts estimate the rate of abortions to be even higher. If the current trend continues, it is predicted that the last Down Syndrome baby in Denmark could be born in 2030.” (www.mercatornet.com)

Really? Eliminating people with Down syndrome is an achievement?

Denmark, you are missing out.

I’d much rather see a nation composed entirely of individuals with Down syndrome! I’d want to move there.

Sure, there would be grumpy quarrels sometimes; a sudden change in plans or a forgotten promise, and suddenly everything in this magical Ds land might come to a screeching halt: “Negotiations broke down when the parties decided to stage a sit-down protest with their arms folded and a firm head shake.” But everywhere you turned there would be amazing things.

The National Association for Down Syndrome has this on their site and it’s funny and so true. Why would any country want to eliminate this from happening?!

If people with Down syndrome ruled the world:

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