Down Syndrome — Usual Musing

Last month, LuLaRoe "consultants" Taya and Robert Budenbender hosted a live broadcast LuLaRoe sales party. After some technical difficulties, Mr. Budenbender decided to lighten the moment by pretending to be retarded. He adopts the quintessential slow, shouting voice, and proclaims, "My name is Robert and I'm special! My name is Robert and I'm really special!" Meanwhile, a woman in the background (presumably Taya Budenbender) cackles as if this is the funniest thing since Gallagher smashed a watermelon.

You can find the video on YouTube if you like. I won't post a link to it.

In the half-assed "apology" video later that day, the Budenbender's trot out a relative with Down Syndrome to use as a prop, and Mr. Budenbender quickly zeroes in on the problem: apparently this whole mess was caused by people who chose to share the video in places where "not nice people" and "people who get offended" hang out. Worse, all these mean people sent poor Bobby Budenbender mean messages, after they took his actions out of context!

Whatever. His "apology" just gets worse from there, including a repetition of the "this should have just stayed in the family" theme.

My daughter, Kelsey, in the last LuLaRoe tights we'll ever buy.

It gets worse. LuLaRoe's response is full of non-committal, unapologetic themes as well. It stresses that the retailers are independent, that Budenbender has "agreed to use the incident as a learning experience," and that LuLaRoe is going to "redouble" their sensitivity and tolerance training and policies. (Anyone know what you get when you double zero?) The sum total of LuLaRoe's response is one weak statement to distance themselves from the problem, without losing the income generated by the BudenBenders.

Every company touts its core values, whether packaging them as a mission to the public, treatment of their employees, contribution to the environment, whatever. And just like individual people, companies are often quite happy to use those "values" as lip-service PR tools, rather than living guidance.

Ironically, you can see LuLaRoe's application of values in part of their statement: "...joined with our commitment not to fight intolerance with eradication..." Apparently LuLaRoe is worried about "eradicating" the Budenbender's business -- i.e., LuLaRoe's profit.

I'd prefer to eradicate people's apparent belief that making fun of the retarded is acceptable.

One more thing, DeAnne and Mark Stidham! Your statement references "tolerance," or touting your great commitment to "fighting intolerance." Let me explain something to you: decent people don't "tolerate" those with special needs. We love them and care for them, because (wait for it, shocking revelation to come) they're people. No toleration is required.

For a more appropriate example of toleration, we'll just note that people are still buying your tights and dresses, and some are probably still buying from the Budenbenders. I guess there'll always be customers willing to tolerate hateful, disgusting "consultants" and the greedy companies who employ them.

I've been on a little vacation this weekend and busy with the last mile of Film Tycoons, so no blogs for a few days. I've debated for a while whether I want to share any of my essays on Down Syndrome and decided to post at least one here this week -- after my younger daughter was born with DS the first couple years were a little rough, to put it mildly. I started a journal/essay collection of sorts and haven't shared any of it until now.

I haven't edited this at all since writing it eight years ago, just a bit before Kelsey turned two. Usually I try to make my blogs somewhat humorous and this one really isn't, but that's okay. Not every day needs to be a laugh riot as long as the majority of them are fun.

People have been asking me "what it's like" to have a child with Down Syndrome. The really short answer is that it's like having any other kid, but that's not completely true. There's the day to day or week to week stuff -- she has regular therapy appointments that I never would have expected for any other kid. There are also the Down-specific things, like the early checks for heart perforations and the looming specter of childhood leukemia, which is far more common in kids with Down and did hit our best friends' son.

I think people want to know something less practical or obvious, though, and I think about it a lot. I thought I knew "what it's like" based on our friends' experience, but when Kelsey was born I realized that there's still a world of difference between being very close to a family with Down and being a family with Down. It's hard to understand "what it's like" without actually being there. So, I've been looking for ways to describe it to a "layman."

I love music and I greatly dislike radio edits. I specifically dislike edits for time. Most radio stations shy away from playing songs that are outside of their three to four minute range. It's pretty simple; three to four minutes is the average length of a contemporary song and a radio station's business model is built around it. They plan their airtime carefully and a six or eight minute song is hard to fit into the play list.

Ever heard the missing verse from Bob Welch's "Sentimental Lady?"  I thought not. — Ever heard the missing verse from Bob Welch's "Sentimental Lady?" I thought not.

It's done in every genre of contemporary music. The editor clips out a few (or many) seconds of music in a place where he thinks the music can be brought together with as little continuity break as possible. The most glaring example I've heard is Billy Joel's Piano Man, where the radio edit actually cuts the second half of one verse and the first half of the next, thus merging two verses into one. You can also hear it somewhat more subtly in songs like The Little River Band's Cool Change or Bonnie Tyler's Total Eclipse of the Heart. (Or anything else written by Jim Steinman.)

The problem is that no matter how deftly the edit is done, anyone with even a slight passion for music recognizes the omission. If you know the song, you notice at least subconsciously that "something's off here."

Of course, the radio edit doesn't ruin the song for you, or ruin music for you. I don't think anyone hears a radio edit and decides he's never going to listen to that song again. But in my experience, there's often still some little touch of frustration or disappointment when the radio edit comes on and you know that that one piece is missing. If you listen to Total Eclipse of the Heart 100 times on the radio, you might hear the missing verse once (and in my opinion it adds a lot to the song.)

That's one of the answers I've come up with so far for "what's it like?" You can't help but notice that a few of the notes are missing but you still love the song.