The Best of Us

A few weeks ago during a break, I saw a blurb on the news about a new blood test being developed. Can’t tell you what it was called. What I do remember is that it’s made to test for Down Syndrome. The reporter had all these great things to say about the test’s accuracy, about how it has the potential to reduce the number of amnio procedures (which carry some risk to the baby), and then, tacked on as an afterthought, mentioned that some folks are concerned that this test may lead to an increased number of abortions.

Out of curiosity, I’ve done some looking around. If you pull up the Wikipedia page, it does mention that many Down syndrome diagnosed pregnancies are aborted. The percentages quoted were over 90%. I didn’t check around enough to see where they got those numbers, because I got distracted by an old NY Times article that talks about rising parental concern in 2007. It also helpfully provided a link to a Pub Med abstract, Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. European Concerted Action: DADA (Decision-making After the Diagnosis of a fetal Abnormality). Isn’t that a mouthful? It was done in 1999, and it says Down syndrome abortion rates were 90 – 92%. It makes me feel a bit sick to read on the National Down Syndrome Society myths and truths site that “one in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone.” The operative words in the NDSS statement would be “live births.”

The Wikipedia page offered another interesting piece of info. It said in its history section:

Most individuals with Down syndrome were institutionalized, few of the associated medical problems were treated, and most died in infancy or early adult life. With the rise of the eugenics movement, 33 of the (then) 48 U.S. states and several countries began programs of forced sterilization of individuals with Down syndrome and comparable degrees of disability. “Action T4” in Nazi Germany made public policy of a program of systematic murder.

How about this little gem?

Plastic surgery has sometimes been advocated and performed on children with Down syndrome, based on the assumption that surgery can reduce the facial features associated with Down syndrome, therefore decreasing social stigma, and leading to a better quality of life.^[90]

Or this?

People with Down syndrome often encounter patronizing attitudes and discrimination in the wider community.

Now don’t get me wrong. It’s not all bad, and there is a lot of good being done for and by those with Down syndrome. I’m cherry picking out some of the darker bits because of a thought that occurred to me. “Why,” I’ve been wondering, “do people sometimes have such a hard time with those who must cope with disabilities, handicaps, and other unusual challenges?” It’s certainly not confined to those people who have Down syndrome. Mistreatment of the unfortunate and weak is a common theme in human history. Why? Why is that?

I’m sure there are lots and lots of reasons, some of which, like bullying, leap to mind. I’m not a fan of bullies, people who want power over others, so when it’s done its leaping, my thoughts go something like, “people stink. There are lots of rotten ones out there.” I do think that’s true, but I also think I’m being a bit stupid when I leave it at that.

Last week, my eyes lit upon the jacket of “Forrest Gump,” and I thought, “You know, he did okay. He just needed a lot of help, and he got it. People who wouldn’t take care of themselves even would help take care of him.” Oh… oh… wait, is that an idea? He just needed a lot of help. That’s something I’ve noticed about Kimberly. She can do so much, but for much of it, she needs help, and she needs more help than “normal” people.

Sometimes, people are pretty rotten and selfish. We like power. We don’t want to inconvenience ourselves to help others, but I really wonder if our profound antagonism toward someone like Kimberly who has unusual and profound need isn’t more than simple selfishness. I wonder if people like her aren’t meant to bring out the best in us, if their need should not invite exploitation but rather call out of us love, compassion, humility, steadfastness, service, patience, and other virtues. I wonder if we shrink away not out of greed, but out of fear of measuring ourselves against that yawning deficit and finding our own selves lacking. I wonder… I wonder… are the needs of others a mirror into which I am afraid to look?

A Wooden “I Love You”

Last week was a busy one. With summer’s end nearing, I was trying to get several projects finished while the weather holds. It’s best to caulk the bathroom and paint and varnish and all that when it can be done outside or with the windows open, so I spent Friday and Saturday busily working. It wasn’t all chores. I also had a chance to say “I love you” and “I care” in a creative manner.

You see, Carey had a pretty stressful week. Some of it was good stress – like being a bridesmaid in a friend’s wedding – and some of it was flat-out hard. Fortified with lots of hugs, I sent her off to Wedding World on Friday. I probably should have packed her an extra box of tissues. Didn’t think of that, though, because I was already scheming about a surprise I had in mind for her, something that would be a special way to let her know that she is loved.

In case you didn’t know, there are lots of ways to say, “I love you.” One fellow by the name of Gary Chapman wrote several books on what he calls “The 5 Love Languages.” According to Chapman, a love language would be “a primary way of expressing and interpreting love.” He believes that a person will give and receive love in one of five ways.

Briefly, the languages are Words of Affirmation, Quality Time, Receiving Gifts, Acts of Service, and Physical Touch. These are pretty straightforward. Words people need to be told in so many words, “I love you.” Chances are that they say “I love you” a lot, too. Quality Time folks want and give attention. You might be able to tell what they care about by how they spend their time. The Receiving Gifts crowd aren’t greedy. It’s that nothing says “I love you” to them like the giving and receiving of gifts. Know anybody who is always doing stuff for others? Their language might be Acts of Service. Try doing something for them, and see if they smile. My mom does! The people who need hugs and give them freely are likely to be Physical Touch folks.

The 5 love languages probably should not be considered to be hard and fast rules. What I’ve seen is that individuals will most likely express and accept love using all five, and that primary might only be in use barely more often than the others. For instance, I’d be a Quality Time person, but words are pretty important to me. Carey is a touch person, which would be what prompted all of the hugs, but I happen to know that she won’t turn up her nose at gifts. Then again, there are people who have a strong primary, like my friend Lana, who loves gifts, or my friend Steph, whom I used to call tactile, because she was always touching the people in her space.

One fantastic outcome of Chapman’s work is the awareness it raises about how differently people can function. We don’t all communicate  using the same methods. There are many ways for me to tell others that they’re loved, and they might be using some of them to say the same to me. Sometimes, they even overlap. Think about it. My thing is quality time. There’s not much, if anything, that can be done without some investment of time. Giving somebody a hug takes a little time. Telling somebody they’re loved takes some time. Acts of service can definitely take time, and gifts? Well, just buying something takes time, and if you’re making it, it’s a good bet more time will be involved.

Speaking of gifts, maybe I should move onto my wooden message. Over the last year, I’ve worked on various projects, like building shelving, that involvedg boards. All of these projects left me with various pieces of scrap wood. I was looking at them on Thursday last week, looking at Carey’s room, and had an idea. “Mom,” I said in a moment of Carey-free space, “I’m going to build Carey a bedside table while she’s gone.”

“Yes!” my mom replied. “I’m in!”

Carey left Friday morning, and that night I started working on her table. She’d been wanting one to replace the stack o’ boxes currently gracing her bedside. Before I started working, I of course, like always, drew up extensive plans. All ten lines easily fit onto a single Post-it note, which I never looked at again after I started. 😛 With Shelah’s help (she got to satisfy her craving for hand work with sanding, planing, and using my drill press) on Saturday morning, I think it took about 8 hours of labor to build the table. Once built, we turned it over to Mom, who was finished painting it by Saturday night. Even Stephers got involved. She picked up a few things for us to help make the table perfect. It just looked great. I was a little jealous, to be honest. I may have to make one for myself.

Sunday morning, Mom came up for “coffee,” and we surprised Carey with the table. She loved it! Judging by her response, she also felt loved. That was the best part.

This was a cool thing to do for a lot of reasons. The table itself filled a need. It will certainly function a little better than those long suffering boxes. It’s also a good example of something I love about my family, that we make a great team. We’re even greater when we’re doing something sneaky. Carey felt loved and supported! Furthermore, it was a great opportunity to express that love and support to her utilizing some of those other languages and gifts possessed by my family members. There just aren’t always good opportunities for that. Last but not least, that table also made a great home for those lonely pieces of scrap, something I find immensely satisfying. There’s a lovely symbolism in turning “junk” into treasure.

Hope you’ve had a great week, and that you had your own wooden “I love you” story!

The basic table shot

Need to get a few more signatures on there