Rare Disease Day Festivities

1 Mar

Whooo has a rare disease?  

I do. It’s not really that rare in this country, it’s just that we don’t routinely screen parents prenatally (they didn’t check for it in the two rounds of genetic counseling I went through, having nearly zero family medical history, and hahahahahahhahahah, of course I have mutations from both sides of the gene swamp.  The universe is a $&@!ing comedian.) and worse, only two states in the US routinely screen newborns.  For the love of Pete!

This is wrong wrong wrong wrong wrong.

So, here’s how we can make the medical establishment pay attention (that isn’t as likely to get us hauled in like my previous plan to flash my pale, porcelain white boobies while holding up an anti-legume placard to illustrate that not only darker skinned males, but also pasty females, can have this disorder. Don’t fret, my dears,  I’m not flashing anyone (not on purpose, anyway. Sorry about the other day, new neighbors across the way).)

In honor of all of those living with Rare Diseases, please (PLEASE PLEASE PLEASE PLEASE) consider signing the petition over at G6PDDeficiency.org.

Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.

It will take you just a minute, but it can save lives and make all of our communities healthier. After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post. Awareness is powerful. Thank you. Thank you.

Thank you.

You are the best.
G6PD Deficiency Newborn Screening Petition

Derailure to Communicate.

27 Feb

Interrobang!?*

Pardon my puntification.

Sorry.  I just couldn’t stop.

I’m all done now.  Let’s carry on as though that didn’t happen.  Thank you.

I know a few folks who seem to be experts in this sort of derailing, and sometimes it can be difficult to determine if they are being unintentional asshats, are just not savvy in the realm of interpersonal communications, are intentionally gaslighting you (link to a fantastic piece on The Good Men Project), or are disordered something-paths or narcissists that only dwell in their own little realm of precision asshattery (or assmillinery.  Yes, I know a few that not only make their own hats but they trim, bedazzle, bejewel, and embroider their asshats to dazzle and confuse unsuspecting people trying to communicate and generally live with them.)

This is a fantastic piece that came to my attention, awhile back, courtesy of The Perorations of Lady Bracknell.  I am sharing this version, as it originally appeared and now, thankfully, appears on Bird Of Paradox.  The website, Derailing For Dummies, is back online, but I can’t seem to find this particular piece native on their site/blog.

I hope it brings some clarity and awareness of communication etiquette, be it your own or that of someone who is a serial derailor (derailetor?).

Even the most adept communicator can benefit from this gem.

Here’s the link:

Derailing For Dummies (reconstructed from Google Cache, by BirdOfParadox.Wordpress.com)

Cheers,

B.

*Stylized Interrobang ink by Matt Lackey at Howl Gallery Fort Myers, Florida.  I’ve had this for over a year.  I like the versatility of the interrobang.  I also have an asterisk to tell folks that there is more to my story.

Image

Lost Cherry

24 Feb



Clean up crew.



Found it.

It had rolled under the butcher block and defrosted.

A wonderful opportunity to put these toy vehicles to work.

The Trouble With Memes.

24 Feb
Not even her freaking Legos.  Nice try, Righty McMeme.

Not even her freaking Legos. Nice try, Righty McMeme.

Memes range from silly to satire to just plain dumb.  They do, though, convey a message and often spread it far and wide and sometimes they are clever and other times they blatantly disregard facts and add fuel to an already dangerous and raging fire.  

Of course, during President Obama’s time in office, we have seen so many of these spreading misinformation to the masses, not all of which are interested in truth or justice or even the grim reality of what their party has become.  

Nobody, no candidate, no government, no penner of memes is infallible.  

That being said, this popped up on my radar the other day (radar = Facebook news feed on that particular day)…

The friend who posted this gift as his status update had included a comment along the lines of “Ain’t that the truth!”

No. No. No. No. No. No. No.

Let’s break this one down, just for shits & giggles.

First of all, the kid building the tower doesn’t own and didn’t earn sole ownership of the legos.
The child who he is speaking to is hoarding all of the legos that are communal classroom property, as her own, for her own use. The child is being greedy.

The kids who are napping may be on a different schedule and need to sleep “all day” because they work the overnight shift.

We don’t know.

If that is not the case and they are just napping “all day” than it is an issue of teacher and curriculum availability and quality, and likely a classroom ratio issue.

It’s likely that the first girl lobbied hard for large budget cuts so that there would not be the usual degree of supervision and teacher oversight so she could do what she damn well pleases, whenever she wants, regardless of the impact on the classroom environment or on her fellow children.

If Obama took half of her legos and distributed them to the other children, that child would still have more legos than any other individual child (if she had 50 legos and was in a class with 25 other students, a division and redistribution of half of the legos would leave her with 25 legos to stack and the other children, as individuals, would have one lego each. It’s likely that due to unbalanced taxation laws, the kids who received the redistributed legos will have to give them all to pay their taxes, meanwhile paying their taxes means they will likely not be able to afford snacktime or lunch and the bank will take their cots. While the first kid (the greedy little hoarder who didn’t work for those legos and doesn’t actually own them) probably has a shitload of legos she has stolen from kind and honest children, in a tax-exempt offshore toy box and likely outsources all of her chores to children in different schools.

So no, the analogy doesn’t work as it is presented in the meme.

 

Fa la la la la, la la la la

23 Dec

This popped up on my Facebook newsfeed today.
So appropriate for the many of us who passionately believe in the immeasurable, magnificent, and glorious power of science & laughter (especially laughter shared).

20131223-224341.jpg

With love & laughter & light (actual & metaphoric),
Bek C.

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