Some Thoughts on ALS…and My Challenge to You

One of my dearest friends died last week.

He died of an infection that was an end-stage complication of ALS (Amyotrophic Lateral Sclerosis, better known as Lou Gehrig’s Disease). My friend was a vibrant man with a huge smile and a big “Hi, pal!!” for everyone. ALS took that wonderful vibrant man and shoved him into a prison it insidiously crafted from his own body – and locked the door. Because of ALS, my beautiful friend was trapped inside a gaunt, voiceless, motionless shell, hooked to machines, fed through a tube, with large unhealed and excruciatingly painful pressure sores – and completely unable to communicate. At the end, he couldn’t even move his eyes.

The true horror of ALS is something I’m not sure even the master of the genre, Stephen King, would be able to capture. There have been plenty of sci-fi/horror stories featuring individuals who are trapped alone – on an empty planet, a different dimension, a different time, etc. Mostly, these people are able to move around, because, well, what kind of story could you tell if your protagonist was unable to interact with his or her surroundings? What kind of story could you tell if your protagonist, trapped on this empty planet, had a black bag over his head that couldn’t be removed?

He was trapped inside the prison of his own body, with a black bag over his head. Was his spirit like a moth trapped inside a jar, battering itself over and over and over again on the impenetrable glass in frantic and fruitless attempts to escape… until the poor creature falls exhausted to the bottom of the jar and waits for death? Was his spirit like that of a man trapped underground in a lightless cavern or collapsed coal mine, possessed of his full faculties – and knowing that no rescue was coming…ever? That kind of horror is very nearly unfathomable…and that, reader, is amyotrophic lateral sclerosis. Imagine yourself locked within your own body with no way to communicate. Feel it. Sit or lie down, perfectly still. Got an itch? You can’t scratch it. Do you have a fold of your clothing pressing uncomfortably into your back? You can’t move to adjust it. Have a cramp in your foot? Nope, you can’t move your toes. After 15 minutes of that, I guarantee you’ll be exhausted. Now, imagine that feeling 24/7 for the rest of your life.

That is the true horror of ALS.

Fortunately, my dear friend was very much loved and was tenderly cared for around the clock by his wife and a team of devoted nurses. My friend was also visited by legions of his friends (I am fortunate to be able to count myself among them), and we all told him in every way we could how much we loved him, on an hourly and daily basis, as his ALS locked him away from us. We could hold his hand, and kiss his temple and smooth back his hair and tell him we loved him. At least ALS couldn’t take that knowledge from him. He knew how much he was loved…that one little candle in the darkness of his prison, burned brightly and steadily.

In the end, I think we were all relieved to see the end of his unbearable suffering. I think he too was glad it was over, and that he was finally released from the rotting shell his body had become. We are all so much poorer for his loss.

I hope I have conveyed to you the real horror of the disease that is amyotrophic lateral sclerosis. There is no cure for ALS. One in 50,000 Americans will be diagnosed with ALS this year, and their families and loved ones will have to watch them die slowly and painfully and be able to provide only palliative care.

That’s why we have the ALS Ice Bucket Challenge. It’s light-hearted and fun, and of course, there are some Scroogy folks who have bitched about it wasting water, but the Ice Bucket Challenge has raised close to $80 million dollars for ALS research since the challenge first went viral in in late July, 2014. And it continues to capture our imaginations and the donations continue to pour in (did you catch that pun…?).

If you haven’t donated, well, consider yourself challenged – you have 24 hours to donate to the ALS Association at alsa.org, or pour a bucket of ice water on your head.

You can do both if you want. I did. It’s quite refreshing. 

Thank you. 

Photo by Ramon de Ocampo

Photo by Ramon de Ocampo

 

Justice for All…? Or Only Just White People?

It’s heart-breaking and it makes me furious that a government-hating, assault-rifle-toting white sovereign citizen and alleged “patriot” can actually shoot real bullets at police with the stated intent to kill them can be safely overcome and taken into custody…

…but a young black man known in his neighborhood to be mentally ill, *possibly* carrying a small knife, gets shot dead (at least 6 shots) by 2 white police officers IN UNDER 30 SECONDS because the cops allegedly “feared for their lives.” (Note: the police officers say that the man was “brandishing his knife” in an “overhead grip” – but I’m here to tell you that I’ve seen the video of that shooting, and that is a flat-out LIE. Both his arms were at his sides when he was shot.)

Well, I say BULLSHIT.

Just another "good guy with a gun" out shopping for the family.

Just another “good guy with a gun” out shopping for the family.

If you think a white man carrying an assault rifle in a the local Kroger is just another “good guy with a gun” and all-around regular citizen practicing his 2nd Amendment rights, and at the same time, you tell me that an unarmed black kid who may or may not have stolen a few cigars is a dangerous thug who deserves to die, that makes you a racist.

That twisted double standard is the definition of right up front racism.  

 

"Thug" who was shot dead in the toy section of Wal-Mart because he was holding a toy BB gun.

“Thug” who was shot dead in the toy section of Wal-Mart because he was holding a toy BB gun.

And if you don’t like that designation, I guess that’s just too damned bad, isn’t it?

Try not to be a racist and I won’t call you one. See how simple that is?

Tell me that a black man has a right to carry an assault weapon into Chipotle because he’s a “good guy with a gun” and it’s his 2nd Amendment right to do so – and if you can’t do that, slap that “racist” label on your forehead and wear it with pride. 

“Christian Nation”? Really?

It has been a while since I have regularly posted on this blog; I got tired of the “all outrage, all the time” thing that life with teabaggers has become. But – is it just me, or has the current crop of teabaggers become even more virulently batshit crazy?

Is that even possible?

Yes. Yes, I think it is possible.

Normally, the way this works, I am inspired to write a post by some random news article or tweet or post on Facebook. Today’s post was inspired by an article I just read on ThinkProgress (an awesome site, by the way – thinkprogress.org) entitled, “At Least Five Homeless People Froze To Death Last Week“, which introduced me to Willie Mae White, a 55 year old woman from Joliet, Illinois…who froze to death on her bus-bench “home” in the bitter cold.

????????????????????????????????????????Reading that article pissed me off. Here we are, a nation chock full of the fattest, wealthiest, most church-goingest bunch of Bible-thumpers on earth, and every single day, the rest of us are forced to listen to wingnut after sanctimonious evangelical Christian wingnut spew hate-filled dreck every day about how America is a Christian nation, that all those dear little “babies” must be allowed to be born (whether the woman who is their incubator wants them or not – or even if she’s dead), that we must prevent those awful gays and lesbians from corrupting our pristine bakeries with their sinful wedding cakes, that we little wimmen must be obedient to our husbands and are completely unable to control our raging libidos without our dear Uncle Sugar handing out birth control pills like candy on Halloween  …and on and on and on.

I’m not a Christian. I’m an out-of-the-closet atheist and I’m not at all ashamed of that fact. But that’s not the point here; I’m not here to debate the relative merits of religion vs. non-religion. Oh, I can – and have – done just that many times, and I always enjoy walloping god-smacked fundies with their own ridiculous assertions, but not today.

Like most atheists, I am very knowledgeable about religion; in fact, there is research that indicates that atheists in general know more about Christianity than so-called “true believers.” If I’m not here to debate the merits of religion vs. atheism, then why am I introducing this little factoid? I’m introducing this little factoid in order to point out that the very most bottom-line, fundamental, boil-it-down meaning of Christianity can be reduced to one single verse from the New Testament book of Matthew (Matthew 25:45), where Jesus says, “Whatsoever you do to the least among you, you do also to Me.”

There you have it. Christianity 101. We are our brothers’ keepers. And our sisters’ keepers. And yet, every day, homeless people living a desperate existence on our streets starve and freeze to death. People like Willa Mae White. And yet, every day, hordes of wingnuts are on the teevee complaining about those lazy  moochers, the welfare queens, the takers, the useless mouths, the 47% of Americans who are unwilling to take responsibility for their own lives, ad nauseum.

homeless-man-polar-vortex (2)So, you Bible-thumping, sanctimonious, well-fed Christianists, riddle me this:  how can America be a “Christian nation” if we ignore the most basic teaching of Jesus in favor of rhetoric trashing the poor, scorning the homeless, and demanding that we stop feeding hungry children? How can America be a “Christian nation” if even one single poor, homeless person freezes to death on a bus bench? How can America be a “Christian nation” when even one child goes to bed hungry?

Take your time.I’ll wait.

homeless 2

Say what, Mike Huckabee??

Holy seething shit, Batman! According to that flabby sack of dreck, Mike Huckabee, I’m merely a tiny-brained female who is completely helpless in the face of my raving libido and must desperately beg my sugar daddy government (aka “Uncle Sugar”) for birth control pills so I can indulge in wild monkey sex all day, every day…? Must…. <pant, pant> have… <grunt, drool> SEX!!!!!

Whoa!Image

Did you notice that entire flood of stupid did not contain a single word about men being sluts (what is a male slut anyway??) for demanding drugs like Viagra and Cialis – drugs with a single purpose: to enable men to have sex – from their Uncle Sugar? Nor did he have anything to say about drugs like AndroGel or Axiron – drugs that boost a man’s testosterone so they can be all manly men again?

Why not, Huck? Why are men entitled to have recreational sex any old time they want and still remain fine, upstanding (sorry for the pun) members of the community – and that their recreational sex drugs must be paid for by their insurance companies? And why, Professor Huckabee, isn’t the religious community pitching a fit about their insurance coverage for their employees covering recreational sex drugs for men? Isn’t that like sort of against all that Biblical prohibition of fornication and suchlike? 

But if I want to take birth control pills in order to prevent a pregnancy once a year and/or control painful and debilitating side effects of menstruation (which, in my case, included nausea, vomiting, constipation/diarrhea and extreme joint pain for 3 days a month)…I’m a slut? With the terrible dysmenorrhea I suffered from – I would have been taking the pill if I was a nun living in a convent! But, according to the Buy-bull, I have to suffer because I was weak and listened to that talking snake? Um… whut?

Well, I’m just a little woman and I don’t know these things. I must leave the tough questions to the wise men to answer. (Oh, god, that much snark is painful!)

Good grief. I’m so sick of these ignorant assholes – next thing they’ll be resurrecting the theory that if I have a uterus, I’m “hysterical.” <eyeroll>

Ayn Rand Is Right About the Moochers

I keep seeing idiot conservatives raging about the poor and the unemployed being “moochers” and “takers” straight out of Ayn Rand’s novel “Atlas Shrugged.” The thing is, I’ve *read* Atlas Shrugged at least twice, and I am struck by the way the current crop of teabag congresscritters sound just like the moochers and takers from the government in Ayn’s book.

They demanded that they be taken anywhere, that they be obeyed instantly – and they never bother to think about who was actually doing the work to get them places and make their wishes come true. In other words, these moochers and takers demanded that the people make bricks without straw.

One particular scene sticks in my head. It’s a group of government officials who demand to be transported by railroad across the continent. They approach a long tunnel in the Colorado Rockies, and are informed by the engineer that because there is only one viable modern locomotive left on the entire railroad network, their train is going to be sidelined because the locomotive pulling it is a coal-fired steam engine – and it would not be safe to use that engine to travel through such a long tunnel, due to a buildup of gases.

The government moochers angrily DEMAND that they be taken through the tunnel AT ONCE. They threaten the engineer and the engine crew with firings and/or jail time. They exclaim that they paid for the ticket, therefore they MUST be taken to their destination – regardless of whether or not it’s safe. They tell the engineer that getting them through the tunnel is his problem, and that he had better solve it toot sweet or heads will roll.

The engineer and the crew do the only sensible thing: they desert the train and disappear. A loud and drunken coal shoveler tells the government officials that HE can drive the train safely through the tunnel, so he stokes the coal fire, and drives the engine into the tunnel… and, of course, the very thing the engineer predicted happens: the engine explodes, killing everyone on the train and destroying the tunnel.

Now, let’s jump to the present, in the real world in Washington, D.C. Think about this: Rand Paul earnestly telling us that giving the long-term unemployed a paltry check in the way of unemployment insurance is “disincentivizing” them to find work. He tells us that we’d actually be doing them a favor if we cut off their unemployment benefits.

How are these people to live? That’s their problem. They got themselves into this situation – they need to pull up their bootstraps and get themselves out of it. 

Same with the other mooch—er, “government officials” who shake their heads solemnly and tell us that the poor are lazy, and that if we cut off their welfare checks and take away their SNAP benefits, they’ll be much more motivated to find a job and get out of poverty, instead of lounging in that comfy government-provided hammock.

Again, how are they to find work if they end up homeless? That’s their problem, say the teabaggers in Congress.

My question to you:

In light of the above, who are the REAL moochers in this country? The poor and the unemployed, who are desperately scrabbling for the means to keep a roof over their heads and feed their families – or the smug Tea Party/Republicans in the House and the Senate, who make a 6-figure salary – and work fewer than 100 days out of the year?

Open Season on Young Black Men

Last night, George Zimmerman was found “not guilty” of the murder of Trayvon Martin. I firmly believe that if the situation was reversed, and George Zimmerman was black, he would currently be serving a life sentence in a hellhole like Pelican Bay.

But I’d like to try something different, and this is specifically aimed at those white mothers of 17 year old boys who are telling themselves this morning that justice was served, that Trayvon was a hoodlum and a thug and deserved what he got and that George Zimmerman got a fair trial and the verdict is just.

So, you hypothetical white woman (and I happen to know a specific woman in Arizona who fits the above description to a tee, including the teenaged honor student son), let’s get started, ask some questions, and set a different scene, shall we?

You’re a white woman. You have a 17 year old son. Let’s call him Terry. It’s a winter night in February, around 7p.m., and Terry asks if he can walk down to the 7-11 to get a can of his favorite soda and a bag of M&M’s before the football game starts.

You say yes. Hey – it’s a safe neighborhood, and it’s only 7p.m. So 17 year old Terry puts on his hoodie – because it’s raining out – and takes off.

Terry gets to the 7-11, buys his can of Coke and his bag of M&Ms and he’s on his way back, talking to his girlfriend on the phone, when he notices a black guy in a pickup truck following him – the guy isn’t just passing by; no, the guy has slowed down and is creeping along, pacing the your son.

So, understandably, your son gets scared – who is this guy following him?? So he turns off down a short cut and starts running, hoping he can get away. When he comes out the other end of the short cut, the guy in the truck is still there, stopped and waiting.

In the meantime, the guy has called 911 and reported an “effing punk” who is maybe “on drugs” and “up to no good.” The 911 operator tells him they’re sending a police car and asks him to stop following the kid, because they’ll handle it. The guy mutters something about how “these assholes – they always get away” and, in spite of what the 911 operator has just told him, he jumps out of his truck and runs after your son.

Now your son’s really and truly scared. He’s unsure of what to do. At this point, the guy is coming toward him — a big black guy, weighs around 200 pounds – who outweighs your son by about 60 pounds. He comes toward Terry and demands in a loud voice, “What are you doing here? Who the hell are you?” Maybe he has his right hand behind his back reaching for something (a loaded gun with a chambered round), but Terry can’t really see, because it’s dark and it’s raining.

Your son freaks out – he has no idea who this guy is, he’s full of adrenaline from fear, so he perhaps reacts badly and punches the guy in the nose, hoping to get away. The guy tackles him. They roll around on the ground. Your son starts screaming “HELP ME!! HELP ME!!!”

Then there’s a single gunshot, and your 17 year old son is now lying on the wet grass, dead, shot through the heart at close range.

The black man gets up, wipes off his hands, tucks away his gun and hangs out until the police show up, and then explains how he was totally justified in shooting your unarmed 17 year old son – because your son attacked him and he was in fear of his life.

The police totally buy his story, pat him on the back, take him down the local police department, where he’s given a friendly interview and the police simply take his word for what happened and let him go. Yeah, the kid was a thug and probably a drug dealer and the guy did the right thing.

So, as the mother of this 17 year old white kid, an honor student in high school, would you feel that this black man would have been justified in killing him?

I DARE you to say yes. I fucking dare you.

I Got an Email From Nordstrom

As many of you may know, I’ve been tweeting the 14 American retailers (Wal-Mart, Target, Gap, Sears, KMart, J.C. Penney, Nordstrom, Foot Locker, Kohl’s, Macy’s, The North Face, American Eagle Outfitters, The Children’s Place, OshKosh B’Gosh) who have refused to sign the Accord on Fire and Building Safety – which has already been signed by several European manufacturers and retailers.

I’ve been pulling no punches – I have repeatedly tweeted this heart-wrenching picture with tweets like this:

This is what you’re buying at @Nordstrom SIGN THE ACCORD. #Bangladesh pic.twitter.com/htOZUtC4by Pls RT

couple died in a collapse buiding

Today I was contacted by Nordstrom and asked for my contact information. I replied with my email address, and received the following email:

From: “Hodgson, Laura” <Laura.Hodgson@nordstrom.com>
Sent: Wednesday, May 22, 2013 2:01 PM
Subject: Nordstrom response to Bangladesh inquiry
Hi Kate,
I understand from our Social Media team that you were interested in discussing why we decided not to sign onto The Accord on Fire and Building Safety in Bangladesh.  First of all, thank you for contacting us directly.  We greatly appreciate the opportunity to discuss this further and directly with our customers.
I am the Director of Social Responsibility for Nordstrom Product Group which is our private-label division which produces apparel, footwear, accessories, cosmetics and home products under a variety of Nordstrom labels.  Nordstrom private-label product makes up a very small portion of the many brands sold at Nordstrom.  The Social Responsibility program was created over 15 years ago and has a dedicated staff, some of whom have been with the program over 11 years, myself included.  Through the creation and evolution of our program we have created protocols and practices that utilize certified, independent third-party monitoring companies to ensure our stringent expectations of suppliers are upheld.
The program is applied globally and includes working with 3 factories in Bangladesh.  We have been deeply saddened by the tragic events in factories in Bangladesh for some time now, well prior to the Rana Plaza collapse.  In fact, we began working with a collective group of companies and industry organizations to improve building and worker safety in January of this year through our participation in the American Apparel and Footwear Association and National Retail Federation.  This working group has formed what is now known as the Safer Factory Initiative (https://www.wewear.org/brands-and-retailers-seek-transparency-and-continued-collaboration-with-bangladesh-government-in-%E2%80%9Csafer-factories-initiative%E2%80%9D/).  This initiative brings together brands, government, unions, factory owners and factory workers to create comprehensive industry standards for factory safety.  It will implement these standards through assessments that focus on electrical wiring, building code compliance, alarm system installation and maintenance, as well as employee awareness training and education.  The education and training of workers is the most immediate goal within the initiative measures and has already begun.
The goal of this working group is to improve the safety of factory workers globally, beginning specifically in Bangladesh, and to ensure their safety in general, not just within the factory walls.  We have come to understand that the concept personal safety and fire safety in particular are not well-addressed in Bangladeshi culture.  As such, we want to ensure our efforts are comprehensive and not limited to just their time on the clock at the factory.
The Safer Factory Initiative is a commitment we have made that requires a financial commitment as well as significant time and effort on behalf of our Social Responsibility staff, agent representatives in Bangladesh, peer companies, factory owners and management, as well as the independent monitors we contract with to carry out on-site assessments.  We have also already identified many independent training organizations for worker training such as WRAP (http://www.wrapcompliance.org/en/fire-safety-training) and worker communication channels such as Labor Voices (http://laborvoices.com/) and Clearvoice (http://www.thecahngroup.com/clearVoice.php) that may be employed to carry out the in-depth training and education we consider critical to ensuring the safety of factory workers immediately.
We have reviewed the Accord thoroughly and believe it is also taking important steps to improve conditions in Bangladeshi factories.  Most of our efforts are aligned and we will continue to monitor the work of the companies involved in the Accord while we continue to move forward with the work we have been focused on through the SFI since January.
These are just a few of the steps that we have taken to ensure that we continue to work with factories that meet our standards to protect the lives and rights of workers in factories that produce Nordstrom labeled product.  I would be happy to answer any additional questions you might have or continue the conversation in general.  Please do not hesitate to contact me directly.
Thank you again for reaching out to us with your concerns and questions.  We take this matter very seriously and are committed to the safety and well-being of the workers in factories with which we contract to manufacture.
Thank you,
Laura
Laura Hodgson
NORDSTROM Social Responsibility
phone: 206.373.5431
Well, okay – good for them. They have a “working group” that has been working on building safety and worker training – but they still refuse to sign the Accord. This was my reply:
Laura:
I appreciate your response, but if you’ll pardon me, it’s “blah-blah-same-old-blah” – and nothing will change.
If this program is doing so much good, why aren’t you publicizing it? If it was worth the time you spent to email me, it ought to be worth the time to let Americans know that you are truly making an effort. People need to know if this is the real deal – or, if you’ll pardon my skepticism, I suspect this is just more of the same-old, same-old lip service – and again, nothing will change. This feels like a lot of hair-splitting and deflecting and disclaimers.
*Something* needs to change. And if this Fire & Bldg Safety Accord is a concrete step in the right direction – for the love of God – sign it and quit trying to find every loophole in order to avoid responsibility and not affect the bottom line. It’s the only decent thing to do.
I told whoever DM’d me that I’m not going to back off on this.
Your customers are well-heeled enough that they can afford to pay a little more for their garments, shoes and accessories.
And here’s the “What’s in it for Nordstrom?”:   Think of the incredible amount of positive publicity it would generate for Nordstrom if your company led the way – and did the right thing for those poor exploited people who make our designer jeans and handbags. If you were to do that, I’d be just as quick to tweet to my 10,000 followers that your company is a leader, has a conscience, is willing to stand up for what is right – instead of prevaricating and smokescreening and tossing out more of the same “blah blah blah.” And Americans, who are at heart decent people, would applaud you.
It’s simple:  Lead the way. Do the right thing. 
We need to take care of each other, and if that means I have to spend a few dollars more on my tee shirts so workers in the 3rd world have enough to eat and they don’t end their wretched lives crushed to death in the rubble of a collapsed factory or burned alive in another factory (this happened in India) where the exits are chained shut – I’m more than willing to do it.
Thanks for taking the time – but it’s not enough.
Kate
If you’ll notice, I have left Ms. Hodgson’s contact information in the email. If you feel moved to do so, please feel free to (politely, please!) contact her and let her understand that as much as we all love a bargain, none of  us wants to wear cheap clothing – if it comes drenched in the blood of the poor, wretched people of Bangladesh and other countries.
I’m sure the Accord is not the be-all and end-all perfect answer to the giant problem of worker exploitation in the 3rd World… but – it IS a start.
(My apologies for the tight blocks of text; I have been unable to insert a blank line between paragraphs.)
UPDATE:
I received another reply from Ms. Hodgson from Nordstrom:

Hi Kate,

I understand and appreciate your frustration in the lack of information that’s been shared about the comprehensive plan and commitment we’ve made through the Safer Factories Initiative. The Accord has certainly had more attention from a PR standpoint but please be assured that this does not mean that the Safer Factory Initiative is not just as much a concrete step in the right direction.

As a part of the working group, we are also very eager to share more of the detailed plan behind it. We expect that more communication with details of the work to be done will be issued next week. But I want to clarify that we are certainly not participating for publicity – we are participating because we believe there is more that can be done and we support the direction that this initiative has taken.

As I previously mentioned, our commitment of both time and financial resources to the Initiative is focused first and foremost on educating and empowering the workers themselves, as well as partnering with government, unions, factory owners and independent monitoring firms. We’d be glad to share progress with you as time goes on. Also, I shared this link before but please do continue to check in for updates from the working group:https://www.wewear.org/brands-and-retailers-seek-transparency-and-continued-collaboration-with-bangladesh-government-in-“safer-factories-initiative”/.

Thank you again for your concern and questions. We do value the ongoing conversation.

Thank you,
Laura

My reply:

“Educating and empowering the workers”…? For what? Not going to work in a factory that’s going to collapse on them? Really?

Laura – I appreciate that you have good intentions, but training the workers just isn’t going to do it. Again, you’ll pardon me, but that’s a whole lot of nothing.

My understanding is that this situation is relatively simple: unscrupulous factory owners are exploiting their workers for profit. Training the workers isn’t going to cut it. Forcing the factory/business owners to provide safe working conditions and decent wages *is* what’s going to cut it.

Please do keep me updated; as of now? I remain unconvinced.

Kate

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