Impact

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.

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

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!

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

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

Orchid

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

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)