Monday, December 14, 2009


Hi everyone,

I know it may look like nothing much is happening with Oz Squad lately, but that's not exactly the case. And what IS happening is really interesting.

What's happening is that Oz Squad members are emailing me suggestions for missions. The past few suggested targets have been small fish - just random bloggers - but their posts have been extremely offensive. So offensive, in fact, that I haven't really even wanted to subject Oz Squad members to the pain of reading them. It's sometimes hard to determine if a target like that is really worth it. Are we just fanning the flames by posting comments on a small blog? Can we make a difference? Are we elevating a person of no real consequence by reading/targeting his blog?

So, here's what has happened the past few times I have been directed to a site like that. November and I have visited the site, done a little background research on the author, and posted a few initial comments. We've really just been feeling out the target, seeing if an official CTA would be helpful. But with those initial emails, we have had some amazing results.

November and I have found that those bloggers were willing to pull their posts once they realized how offensive they were. Some have even sent apologies. It has happened more than once. So, before we even had a chance to launch a mission, the mission was over.

Thanks for the suggestions, and please keep sending them whenever possible. And remember that Oz Squad is having a real impact, even though it's not always obvious.

Saturday, November 21, 2009

Our Fragile Emissary

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Written by Nancy Tupper Ling

Tuesday, November 10, 2009

Mission 6: The Tard Supper

Dan Savage just published a blog post about a painting by Russian artist Raoef Mamedov. This painting recreates the Last Supper, replacing Christ and his disciples with people who have Down syndrome. I'm not sure what the artist has in mind with this particular piece. It's beautifully rendered, and it's obviously open to interpretation. From my perspective, it's everything good art should be. I think it shows people with Down syndrome in a very beautiful light. I dunno, maybe other people just look at it and laugh at the "retards." Or maybe it's a hit piece on Christians. Like I said - it's open to interpretation.

Anyway, my problem is not with the artwork, it's with the headline Dan Savage chose for it. The Tard Supper. Ah Dan, so eloquent. For those of you who don't know, Dan is a nationally syndicated, openly-gay sex columnist. I happen to be a big fan of his column, because he is incredibly smart, interesting and witty. But surely Dan, of all people, should know what it feels like to be dismissed by hateful and hurtful labels. So I won't give him a pass as he mocks the mentally challenged.

Oz Squad members - please visit this link to see the post for yourself. Dan could benefit from hearing our comments. He should change the headline and write an apology, and that's what we all need to ask him to do.

For more information on the artist, here's an excerpt I pulled from a press packet. It explains some of his technique/motivation.

Moscow-based Mamedov utilizes the process of film direction by collaborating with a painter, photographer, computer technician, and actors to produce extrasensory photographs. Though the scenes viewed in the final works are complex with multiple players, each actor is separately photographed with Mamedov directing the actors’ emotions and providing the vision for the subsequent digitization and computer placement. Adding a strange conceptual twist, his “actors” range from institutionalized mental patients to individuals with Down Syndrome enabling him to utilize the true abilities of the actors’ minds as an art medium that heighten the pieces’ cultural connections and meanings.

Mamedov tackles the Bible and foundations of Christianity with straight adaptations of historical masterpieces by Nicolai Ge, Leonardo da Vinci, and Jan van Eyck. The featured works depict scenes from the New Testament played by actors with Down Syndrome. In portraying biblical characters, elements of the actors’ real-time fragmented state of mind and their tendency to think in quotations highlights the humanism of those portrayed personalities. Mamedov relates the state of his actors’ minds to Satori, a Zen Buddhist notion meaning sudden enlightenment or a flash of sudden awareness. This notion of a flash of consciousness elevates the visual impact of the art as an essentially pure communication of the acted message.

Want more? Find the full packet here.

Thanks to Oz Squad member Melissa for the alert!

Wednesday, October 14, 2009

What’s In a Number?

Some people, like a certain washed-up, no-longer-licensed-to-practice OB, like to throw around a big number, THE big number... 92%. That’s right 92% of women with a prenatal diagnosis of Down syndrome abort their babies. That’s some majority.

Only 8% of women who know they are carrying a baby with Down syndrome choose not to terminate.

But that number, 8%, really isn’t an accurate representation of the percentage of women who are open to the idea of giving birth to a baby with Down syndrome. You see there are a whole bunch of women that decline various types of testing because test results indicating Ds will not alter their plans to have their baby.

I was one of them and I know of many others.

We can assume that if by some fluke they had been prenatally diagnosed, the majority of them would have chosen to continue their pregnancies. These women should be counted as knowingly, willingly, perhaps even welcomingly (made that one up) choosing to give birth to a child with Ds rather than abort it.

If these women were counted what would that do to the 92% number? Would it drop to 90, 85, 80, or even lower? There’s only one way to find out... Ladies, stand up and be counted.

Take the Poll
Over in the right column is a poll question that asks...If (and only if) you had an after delivery diagnosis of Down syndrome, please indicate the level of prenatal testing you received during your pregnancy. (If you had non-invasive testing and followed up with the CVS or an amnio that returned incorrect results, please select the CVS/amnio option). Also, an ultrasound, while a nice view of the baby, only counts as a test if you did the 20-week 3D check-for-Ds ultrasound or any other 3D ultrasound that was specifically performed to look for Ds markers.

Written by ds.mama

Tuesday, October 6, 2009

Seeing the Possibility in Bridget

Three years ago, our family was sitting in a hospital room with heavy hearts, looking at a beautiful little girl in a tiny bed and wondering what challenges she would face.

When Bridget was a newborn, we learned about Down syndrome through what we read or were told by others. As Bridget has grown, she’s shown us all far more about herself—as well as Down syndrome, and what it’s like to live with a disability—than any textbook or person could have.

Bridget does not see herself as challenged. She is just a kid—being and doing. Like everyone else, Bridget has her own set of skills and challenges. Like everyone else, she is also full of dimension and potential.

Today, Bridget is a happy, healthy and secure three-year-old who continues to reach milestones on her own terms. She’s growing, learning new things, making friends and developing and a strong sense of herself. She is taking her first steps toward independence.

A few weeks ago, I helped Bridget climb up the stairs onto a school bus for her first day of preschool in our local school system. She is thriving.

Bridget is aware and energetic, with the whole world ahead of her. And although we are excited to see what’s in store for Bridget, we are not in a hurry to see where she’s going or even how she will get there. With a little extra support, she’ll make her way. And we will enjoy the journey right along with her.

Bridget is opening hearts and minds daily. She's showing others that all people have abilities, and that our human value is not based on our achievements.

We realize that we won’t know all of Bridget’s capabilities unless we give her the chance to learn, to build relationships, to be part of the community and to live her own life in her own unique way.

A friend once said that when you’ve seen the light in someone the world may reject—a person who doesn’t fit the mold of what society says is perfect, successful or beautiful—then you begin to see that light everywhere. We understand that clearly now.

Bridget is interesting and funny and talented, all in her own right. She deserves the chance to make her own way in this world.

We’ve learned to never underestimate Bridget. What we know now is that she is not only capable of far more than most people would think, but also that she is a joyful, important, contributing member of our family and of the community who makes life brighter for all of us.

Given encouragement and opportunity, the world is full of possibilities for Bridget--and for the rest of us.

Written by Lisa of Bridget's Light

Friday, October 2, 2009


Unlike our wild boy weeds
who shall grow strong
and burst into golden buds
with or without,

You, beautiful child,
are the exotic orchid
whose delicate blossoms
must be coaxed into bloom
by dappled sunlight.

You, exquisite child,
rooted in enriched soil,
watered with joyful kisses,
pruned by love’s touch,
will flower enchantingly.

You, precious child,
are the sweet fragrance
that delights our senses
and pollinates adoration
in this family’s garden.

(Orchid photo by Greg Allikas, used with permission)

Written by TUC

Tuesday, September 29, 2009

Excuses, Excuses

Ten years ago a close friend of mine came to me when she was 18 weeks pregnant and explained that her child had Down syndrome and that she and her husband had decided to abort it. She told me that the doctor said it would be a financial burden on the family and that it was unfair to their other three children.

I felt really bad for them and never gave much thought to their reasoning.

She delivered her dead child, held him and had photos taken, named him something angelic, and then had him cremated and put in a fancy urn. He took his place on the mantle above the hearth in their formal livingroom. Occasionally it would come up that they’d “lost” their son, though we all knew where he was. They went on to have two more typical boys and are just now wrapping up an ugly divorce.

I know all the excuses for why you might throw away your baby with Down syndrome. I have heard them all because I told myself each one of them after I got my prenatal dx of Down syndrome. This time it was my life, my child, my duty to give thought to the reasons why.

1. A life of suffering... I wouldn’t do that to my child. Yeah, me neither. Guess what? It is not a life of suffering. People with Down syndrome do not inherently suffer. I thought about the people I had known in my life that had Down syndrome. I couldn’t pinpoint any real suffering. They love, laugh, learn, and spend their days being generally peaceful.

2. All those medical problems... what kind of life is that? I read the long all-inclusive list of medical problems that children with Ds might have. I researched and found that while it is true that certain medical conditions are more common in people with Down syndrome than in the general population, that doesn’t mean that most people with Ds have ongoing medical problems. Some children with Ds will face congenital medical challenges, the biggie being cardiac defects.

My baby had a major cardiac defect and I was scared. But a fetal cardiologist explained that my child (like most children with Ds who have cardiac issues) had a very common defect that could be completely repaired in early infancy. Is heart surgery scary? Of course it is for the parents and loved ones but it is also just a 5 to 7 day hospital stay with over a 90% complete success rate.

Bottom line? Almost all infants with Ds who are born with congenital defects get a fix within the first year of life and from then on face only the basic bugs and boo boos of childhood like all other children.

3. It isn’t fair to our other children. What isn’t fair? The “extra attention” my little Henry might get from an early intervention specialist? That my Johnny might have to hear a nasty neighborhood kid call his little brother a disparaging name? Seriously? This is a reason to end my baby’s life?

I have another good friend who has a little brother (grown up now) with Down syndrome. In the 14 years I have known her she has never even hinted that she was unhappy about him or that she felt that it was unfair to her in anyway. In fact, she always spoke of him and treated him with love. She once told me that she didn’t even know growing up that he was considered moderate to severely mentally delayed until she read some of his paperwork years later.

The reality is that she experienced unconditional sibling love and she saw her brother work hard and consistently to achieve milestones.

Is it possible that my Johnny may experience some rough times concerning his sibling with Ds? Yes, of course but I found that there are lots of sibling support programs that can help him grow through those times.

4. Who will take care of this person when I die? I agonized over this one. I didn’t know that because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. I didn’t know that I could set up a special needs trust (funded by life insurance) that could provide whatever my son needed.

Eventually I decided that I just had to trust that my child would grow up to have friends, family, neighbors, and various paid staff that would care enough about him to provide any support he might end up needing.

5. People with Down syndrome have short (50-60) year life spans... how can I knowingly give birth to a child I will most likely outlive? Ok, this one came and then went rather quickly as soon as I considered the alternative, “Should I end my baby’s life so that it doesn’t have a short life..?”

6. This child will be a financial hardship on our family. I remembered what my friend had been told by her doctor. We are not rich people. I got nervous. So I looked into what exactly was going to cost so much more for this child. Housing, clothing, diapers, food... none of this would cost more. Health care? A deductible is a deductible and a co-pay is a co-pay, Down syndrome wasn’t going to change those numbers much.

Are there people whose insurance companies will deny coverage for a pre-existing condition who cannot get their child covered under Federal Medicaid? Maybe, but we are not them. Would I have aborted if we were one of them? Would I let one of my other children die if they were stricken with a life-threatening illness or accident for fear of medical bills?

7. Is it fair to have a child that will likely use more resources than it can produce? I come from a long line of working, tax-paying people. I have family members who have fought in wars to protect your freedom and lifestyle and that of our children. I (and my many childless friends) contribute to my and your typical children’s educations in the form of school taxes. My husband and I, and our family, and our friends have more than paid my son’s debt to society.

But even if that were not the case, should poor, non-land-owning people abort their children because they are a drain on our society’s resources? If you answered yes to this question, you have more to whine about than a few babies born with Down syndrome.

8. My child won’t have a normal life. What the heck is a “normal” life? I figured I hadn’t lived a normal life and I am no worse for wear... Now I know that if normal means to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then my son is experiencing a normal life.

For a while I wanted one or more of these excuses to feel justifiable and good but none would give me the peace I needed. So my husband and I decided that Henry would live. I do not judge my friend who came to a different conclusion. But I do feel sad for her. She once confided to me that it hurts her to see my beautiful son. She has an urn and I have a lovely child full of life and laughter. And this child of mine, he blows away every excuse in the book.

Why do I care that you should know this? Because someday you might be hearing these excuses in an up close and personal way.

Written by November who was motivated by Tara (and I even plagarized her a bit)

Monday, September 21, 2009

The Skeptical OB (Part 2)

Open letter to Dr. Amy Tuteur:

You have now posted two inflammatory and misguided commentaries about Down syndrome. The first was hurtful, and the Ds community told you so. Your second post, however, is enraging. Because instead of giving an inch and apologizing for your ignorance, you have chosen to rub salt in the wound. So I am now prepared to hand your ass to you, publicly. Start thinking about whether you want it in paper or plastic.

First, allow me to definitively answer the question posed by the headline of your initial post.

Yes, we should lament the disappearance of Down Syndrome. Because not lamenting it would speak volumes about the state of morality. Down syndrome is a random mutation - it can't be prevented with a vitamin or vaccine. Therefore, the absence of people with Down syndrome means one thing and one thing only: they have been identified as having Ds and, for their crime, denied the right to exist.

It's true - snuffing out Down syndrome would eliminate mountains of sadness and oceans of tears. But it would also eliminate a lot of the things that make life memorable and joyous and SPECIAL (pun intended) for many people. It would eliminate countless acts of courage and kindness. Sweet smiles of innocence. It would eliminate a lot of songs and paintings and poems. It would eliminate tears of joy.

Amy Tuteur, you took a particularly provocative shot across the bow of the Ds community, and you were called out for it. You may be tempted to dismiss the heartfelt comments on your blog as the ramblings of a bunch of extremists or religious fanatics. And you would be wrong. They are the war cries of compassionate, intelligent, outspoken people - people of differing backgrounds and beliefs - who feel that they are being spoken FOR instead of listened TO by a person who should know better.

And now, allow me to address your second post. You have decided to defend your ignorance by speaking, once again, for the Ds community. Your defense? We parents simply must feel that anyone who disagrees with us - anyone who chooses to abort her Ds baby - is wrong. But those are your words, not ours. You have either misinterpreted the reason for our anger, or you are purposely misrepresenting our position. And I refuse to be your straw man. So I'll clarify things for you.

The people who commented on your initial post aren't against prenatal testing. Most of us aren't even asking to take away other people's right to abortions. But we know something that you don't know. We know what it feels like to live through the darkest days imaginable. We know real fear and real pain. We know how it feels to be handed a future different from the one we imagined, and to search - frantically - for accurate information about that future. We all went through this process, and we are passionate about making it as easy as possible for others who may embark on the same journey. And instead of telling those people, in their most vulnerable moment, that they are about to be forever burdened with a child who shouldn't even exist, we are here to tell them that many, many, many people have walked this path and found it to be a wonderful road indeed. It's not all doom and gloom. It's difficult, but it's not the end of the world. It can be quite beautiful.

Our stories deserve to be heard. They are credible and worthwhile and IMPORTANT! How dare you brush us aside as if we are all delusional! How dare you act as if the world would be a better place without our children! Do you really think we're just going to sit silently as you shovel that shit?

You are, quite simply, out of your league here. Your original post isn't well thought out, your attempts to defend it are twisted, half-baked and increasingly desperate. It's obvious to your readers, and it's obvious to you, whether you want to admit it or not.

Some of the comments aimed at you are harsh. I'll admit some are rude, some are a bit offensive. But I'll look past that, because those comments are a reaction to your own low blows, which are crafted to conjure a special kind of pain. I'm awestruck that you would leave such snarky comments right out in the open for all to see. I hope your children are proud of their mom as they sit and stare, slack-jawed, at your cruelty.

In closing, I want to pose a question of my own. On what day were you halved like a melon so your humanity could be scooped out and rinsed away? And I wonder what I was doing that day? Hmm, maybe I was back in college, working my part time job in the kitchen of the local retirement home. Serving food to the Alzheimer's ward. Maybe that's where I learned to have compassion for people - even those people who need assistance from the rest of us. ESPECIALLY those people.

Maybe you should have taken a job like that one.

Eh - this is starting to get a little melodramatic, even for me, so let's just wrap things up. At this point, I don't want an apology. I just want you to crawl back into your hole and try your hardest to leave the Ds community unmolested in the future. Pretty please. You do that, and I'll try my hardest to forget all about you and your blog and your amazing intellect.

Dan Niblock (Down With Oz)

Friday, September 18, 2009

The Skeptical OB

These days, after the passing of the “Prenatally and Postnatally Diagnosed Conditions Awareness Act”, one would expect an OBGYN to present a fair and accurate representation of the future possibilities of children born with Down syndrome.

Dr. Amy, The Skeptical OB, does not do this. Instead she discounts that raising a child with Ds can be an enriching experience and states that it is a "lifelong burden". She goes on to say that, “Raising a child with a serious genetic anomaly is a major burden, one that never ends and one that often gets harder as the years go by.”

When parents commented on her post saying that this is not true, she insists their opinions are simply personal experience not applicable to the overall view of Down syndrome. Ironically, Dr. Amy is NOT speaking from experience and is just regurgitating stereotypes.

Her one-sided attitudes are inappropriate given her position as an “OBGYN”... Go visit and see what you think.

Sunday, September 13, 2009

Just A Normal Guy

I'm just a normal guy. Just your everyday, average, long-haired Eagle Scout. Must be a million guys just like me. You know, straight guys who hate sports, have a passion for typography, color and design, and who have a collection of custom, handmade knives? And who love the Muppet Show?

My son Ozzie, he's not normal. Not according to the standard rubric. Mind you, he doesn't know. From his perspective, looking through those big, beautiful almond eyes, I imagine he feels quite normal. I'm not sure how I'll ever even explain the concept to him, and I hate that I have to do it at all. But he will likely have questions for me some day, questions about why he isn't quite like others. And I hope, when that time comes, I have figured out an answer.

Honestly, I'm growing tired of the whole concept of normal.

Normal - the pursuit of normal - is a fool's errand, anyway. We all think we want normal, but when we have it, we want something else. Something different. That's why people wear jewelry and customize motorcycles and avoid tourist traps and tweak their orders at restaurants. Quite often, normal isn't very interesting.

And normal is in the eye of the beholder. What's normal in Zimbabwe isn't normal in Iceland isn't normal in Australia isn't normal in Utah. There's a guy who walks around the street in front of my office every day wearing a giant hat with flowers on it and mismatched, striped socks. It's funny to imagine him waking up in the morning, slipping on those socks, plopping that stupid hat on his head - it's a routine that must seem very normal to him by now.

You really want normal? Really? Fine, you can have normal. Crank the Beatles in your Camry while you drive to the ice cream shop to have a vanilla ice cream cone (not a waffle cone or a sugar cone, just one of those normal, tasteless ones). While you're having your treat, you can think about how much you dislike Tiny Tim, flying saucers, stilettos, David Lynch movies, Antarctica, Pop Rocks, llamas, Pac Man, April Fool's Day, Pluto, the pyramids, mohawks, white tigers, extreme sports, Japanese robots and Leonardo da Vinci.

Me and Oz, we'll be having mint chocolate chip.

You know, I once drove hundreds of miles out the way just so I could make a left turn in Albuquerque (note: if you don't get that, you didn't watch much Bugs Bunny). I realize that was not normal. But somehow, even as my iPod shuffles through Italian rock music, Britney Spears, and the Wu-Tang Clan, my life - my life with Oz – feels perfectly normal to me.

Written by Dan, father to Layla and Ozzie

Thursday, September 10, 2009

Mission 5: A Tasteless Google Ad

I want you to do something for me. Do a Google search right now for "Down syndrome." Now check the ads that you see on the results page. My guess is that one of those ads - perhaps the top spot - is taken by a clinic offering third trimester abortions. I don't want to use the name of the clinic, because I don't want to give them any free publicity, but it rhymes with "Ace" Medical Care.

I'm painting a big bull's-eye on this ad. I would like to see it disappear. I don't care if someone sees it when they search "abortion," but people don't need to see it when they search "Down syndrome.' It's another example of a culture of normalization, a culture that repeatedly sends the message that it's okay to abort these babies. Some mothers will choose this route, and that's their choice. But I don't want this message broadcast to a woman who has just learned that her baby may have an extra chromosome. A terrified woman sitting alone, late at night at the glow of her computer, desperately searching for info about a condition she never really thought about. That woman does not need to see that ad at that time. It's disgusting.

I don't really know how to get rid of this ad. We could all write the clinic and ask that it be removed, but my guess is an abortion clinic has dealt with people more determined - and more vicious - than Oz Squad. I'm guessing we won't get far with that route. We could email Google. Again, Google may have no interest in deciding what ads to accept. We could all click the shit out of that ad every day. Run up the bill - those types of ads are paid for per click. However, there's a possibility that "Ace" Medical Care could petition Google to check the ip addresses of the clicks and get a refund. I'm not sure they can do that, but it's possible.

Does anyone have any other ideas? Anyone? Anyone? Bueller?

Tuesday, September 8, 2009

A New View

My little Sydney just turned two last month and my idea of normal has changed over the last two years. I got a prenatal diagnosis, so I knew ahead of time that Sydney would have Down syndrome. I remember the first thing I wanted was to talk to another parent of a child with Ds who also had additional children. I remember thinking… I want to know how “normal” my life was going to be, not how much it was going to change.

I was pleasantly surprised when I was connected to a family who had two beautiful girls, each was the same age as one of my boys. (Sydney was still cooking). We met for lunch and I watched my boys interact with her two girls, the youngest with Ds and I was put at ease. They were both just little girls. Even though their 3 year old daughter with Ds didn’t speak words yet, she understood what was going on around her and played and interacted just fine with my boys and her sister. That was all I needed.

Has my life changed since the birth of Sydney? Everyone on this OZ Squad knows that yes, indeed it did change. Would I change it? No, not at all. I have already learned so much about life and love that I would never change. Did I have fears and doubt when I was awaiting the birth of Sydney, absolutely I did, but she was designed to be exactly as she is, and I am blessed to be her mommy. Even when she is an ornery two year old… just like all her two year old friends.

Jeanette, mother to Zachary, Anthony, and Sydney

Friday, August 28, 2009

Mission 4: Health Checks Now

This mission was brought to Oz Squad's attention by squad member Monica. Monica spotted a few poorly-worded articles about Down syndrome on a health info site called healthchecksnow. The articles aren't intentionally or overtly offensive, but they do contain statements that some may find offensive and over-generalized. Several OS members posted comments with thoughtful suggestions about how the articles could be rewritten to make them more accurate and sensitive. If anyone else would like to read the articles and respond with comments of your own, here are a few links:

What is Down Syndrome?

The Face of Down Syndrome: Physical Characteristics

This is a great example of how Oz Squad can serve as an Internet watchdog. Changing a few phrases on a site like this one may not seem like it makes much of a difference. But there's a lot of bad info online. A poorly chosen word, an old statistic, a negative tone in what should be a neutral article – these are things that matter. They can subconsciously affect people's attitudes toward people with Down syndrome. They can have subtle influences on a doctor's choice of words at a critical time. They can perpetuate myths and stereotypes. They can make life a little bit harder for every one of us.

So when you spot something like this, please take a few moments and send a comment to the author. If that doesn't help, let us know about it. We can work together to educate the public, clean up these frustrating little problems, and make the world a little bit brighter for our kids.

Thanks again, Monica!

Wednesday, August 19, 2009

Tech Tip

A few people have let me know that they are not receiving Oz Squad emails. I'm guessing this could be related to the fact that we have lots of people on our email list, and our emails are getting tagged as spam. The solution? Check your spam folder and look for Oz Squad emails. If you see them, mark them as "not junk mail" or "safe sender" or whatever your particular email service uses. That should take care of the problem.

Monday, August 17, 2009

Mission 3: Shame on - Update

sannse, of Wikia's technical support team, has emailed me to say that has decided to remove the offending page. Thanks to all of you who went after this one.

Sunday, August 16, 2009

Mission 3: Shame on is the parent of several wiki websites (sites that use wiki software to enable collaborative content development) including a wiki called and this website hosts a page titled, HowTo:Get Downs Syndrome.

(Warning: wait 45 minutes after eating before going to read this page. Otherwise, you will puke.)

I realize that since this is a wiki, any one of us, and everyone of us, can go there and alter this horrific content, however, I wanted to have it removed the polite way. So I contacted and explained that having a web page that encourages abducting, torturing, and raping (and killing... that’s the part under the blackout) individuals with Down syndrome is highly inappropriate, and um... even illegal, and certainly in violation of the wikia terms of use.

Their response? An unconvincing definition of dark humor for my edification... Here is an excerpt:
“The humor is often dark, mocking, satirical, and sometimes offensive. But, at its best, it can also be very funny as well as thought provoking and enlightening, giving a new twist to an old subject.”

I am guessing that sannse, the tech team responder to my complaint, did not actually read the page because you just can’t connect what is sitting on that page to anything “funny, thought provoking, and enlightening.”

sannse wrapped up with a suggestion to contact the Uncyclopedia folks with this caveat... “But please be aware that Uncyclopedia is not often amenable to removing articles due to offense alone and the atmosphere of mockery can often carry over into discussions.” Yeah, thanks for the warning and the brush off, sannse.

So guys, visit wikia’s special contact page and let them know that their condonation of the Uncyclopedia - HowTo:Get Downs Syndrome web page is intolerable. If you have other ideas for taking down this garbage, post them in the comments or, ahem, covertly do what you must.

Saturday, August 15, 2009

Don’t Tell Me I Can’t

Don’t tell me I can’t
when I’ve already proven to so many that I can and have

Don’t tell me I shouldn’t be here
when so many people would not have learned the things that I have taught them

Don’t tell me I have no value
when I have given so much joy, laughter, and love to so many

Don’t tell me I’m different
when everyone in the world is their own unique person

Don’t tell me how to live my life
when there are so many possibilities for me to try

I can do things!
I was put here on this earth because of my value and difference
Possibly to even teach you how to live a better life

written by Suzie Smith of Lily's Life Is Great
(posted with permission)

Monday, July 27, 2009

Oz Squad Guidelines

Attention Oz Squad members:

Please click this link to download the official Oz Squad dossier. It contains important information about the organization, operation and goals of the squad. It also contains helpful participation tips and brief bios of the squad leaders. We hope you like it.

UPDATE: A few people said the original download was blocked by their firewall, so I set it up on a different host site. Click the link and wait for a moment and the document will appear in your browser.

Saturday, July 25, 2009

A Beautiful Life

(A Poem for Bridget by Mom)

Look at me
Loving Life

See what
I can do and
All I am

Look closely…
Through the soft focus of my life
frame by frame
You’ll see the essence of things

I see the world
in its most perfect state
I see the good in things
and in people

I see a world
of Joy, Hope
and Infinite Possibility

See me for who I am

Deliberate, sweet and true

I am beautiful
I am strong
I am happy
I am loved

I live a Beautiful Life

I am

A Beautiful Life

--written by Lisa of Bridget's Light
(posted with permission)

Sunday, July 19, 2009

Mission 2: The Hardest Choice

Allow me to present two articles in the Times Online. One is about a mother who aborted her baby when she found out it tested positive for Down syndrome. It is shocking. The other, paired with it in order to "balance" the story (I assume), is about a woman who chose to keep her baby. Our comments could help illuminate the issue.

Thanks to Rebecca for this link.

CLARIFICATION: After speaking with a friend who was confused by this mission, I realize I could have done a better job of clarifying my reasoning for this post. For the record, I am pro choice. I respect the fact that this mother made a very hard decision - a choice that feels right for her. What upsets me is the "white or wheat" presentation of the choice to abort babies with Down syndrome. I don't like the fact that it is so normal, so commonly accepted - sometimes even expected - that a mother would abort a child with Down syndrome. This attitude is offensive because it devalues the lives of these children and makes them seem disposable. And they are not. And yes, it is difficult to raise a child with Down syndrome. And it is painful and sad to learn of this diagnosis while pregnant. But it's a shame that so many people are not willing to face this challenge, because if they did, all children would have a greater world in which to grow up.

Mission 1: Pray 4 Trig

Pray 4 Trig is the ultimate backhanded compliment. This site is attempting to recruit people to pray for Trig Palin on April 18, 2010 (Trig's next birthday). They are going to ask God to make Trig "whole" and heal Trig of his "affliction." Hear that sound? It's the sound of God's jaw hitting the floor. Stop over and let them know what you think about this.

Read some of the responses Oz Squad team members have posted on their blogs:
welcometoillinois: Don’t
TUC: On Suffering
Simeon’s Trail: I might vomit.
Disposable: Don’t pray for Trig, the work’s already been done
Chase and More!: Perfect Because of (Not in Spite of) Down Syndrome
A Hapa Girl and her Hapa Family: Re: Down Syndrome Question About Suffering