I Don’t Wear Scarves (Memoriam: Mom)

One of my mother's chemotherapy scarves. Yes, paisley skulls.

One of my mother’s chemotherapy scarves. Yes, paisley skulls.

It was warm and hazy when I woke up this morning, the room oddly yellow for the time of year, motes floating lazily through the dayspring light. Blinking sleepily, I saw Mom laying next to me, saw her smile, saw her stroke my hair and say hello, good morning, get up, you’re going to be late, goodbye, don’t let the bed bugs bite.

I blinked twice.

She was gone.

Don’t cry, there’s always a way
Here in November
In this house of leaves we’ll pray

An Ebolanoia Anniversary–Or, The Emperor’s [Lack of] Disclosures

It’s the Ebolanioa anniversary! Over at Slate, Tara C. Smith takes us through a quick walk down memory lane, and the utterly outsized reactions and political theatre America went through a year ago: quarantines and threats and Daesh-licking doorknob villains, oh my.

Hulk-hits-Thor-after-defeating-alienOne thing still sticks in my craw: the utterly ludicrous suggestion from respected epidemiologist Michael T. Osterholm that we were all just afraid to talk about Ebola becoming airborne, but it was a real threat. Even though multiple, well-respected virologists and Ebola experts immediately corrected Osterholm’s panic piece, the panic piece is what took life, with other news outlets repeating him word-for-word–and few people questioning why such a respected epidemiologist would even propose such an outlandish thing, let alone in the pages of a New York Times op-ed rather than in a respected, peer reviewed publication.

While it pains me to point this out, because Osterholm was quite complementary of my anthrax- and NSABB-related posts, someone has to play the fool and point out the emperor has no clothes. Or in this case, the emperor has a pretty glaring conflict of interest, neatly laid out for all to see if they just take a look:

Do you see it?

3M, a “leading underwriter” of CIDRAP, where Osterholm is (and has been) director, is also a leading manufacturer of N95 masks. The sort of mask used for personal protective equipment if you’re treating a patient with an airborne infectious disease. The sort of mask that is typically advocated by those who have more than a little paranoia when it comes to disease in general.1 The sort of mask all over this National Institute for Occupational Safety and Health website.

Look, I completely understand the need for funding journalism, and as a whole I really enjoy CIDRAP’s reporting.2 Having been in publishing and journalism for over a decade at this point, I understand the need for funding, and just about everyone knows I have no lost love for the University of Minnesotta in general. But when you accept funding from outside sources, you have to start thinking about how that funding influences what you think, support, advocate for and write about. We know that it doesn’t take much to subtly, subconsciously, or consciously influence opinions, and major funding from a source of masks that would block airborne Ebola? That’s a pretty big conflict of interest that should be disclosed in any “but what about mutations” panic discussions in the public sphere.3

It’s been brought to my attention that Osterholm et al’s mBio opinion piece, which I didn’t directly refer to here but waved a whole bunch of shade at, was amended in April of this year to “address” perceptions of conflict of interest. Unfortunately for CIDRAP and Osterholm et al, this attempt at damage control is pretty piss-poor. Their objection to being called out on the 3M conflict of interest boils down to what we’ve heard in other situations: the money goes into a giant pot at the university and we don’t know what dollars from them affect us, and besides, it’s unrestricted and they have no say!

Well. Except that if, per CIDRAP’s donation page, only 2% of their funding comes from the University proper, and they know who gives what to such a specific degree that they can list The Benson Foundation as a principle underwriter and 3M as a leading underwriter, then you can’t really say that “it just all goes into a pot and we don’t know which particular dollars 3M touched.” Because what you do know is that if 3M hadn’t touched a significant chunk of the money in that pot, it wouldn’t be there.

You, as an individual, know if you have $30 or $100 in your wallet, and you definitely know if $70 of the $100 came from a particular place. Trying to claim that a business that requires their donated money to function has no operational knowledge of where the money comes from is insulting to basically everyone’s intelligence.

The mBio amendment also attempted to claim that since they don’t talk about respirators in the piece, certainly they can’t be relevant to a piece talking about fears of an airborne mutation. I leave this to the audience: Do you think respirators are relevant, at all, to protection from airborne disease, even if not directly mentioned in an opinion piece? Hmm.

Look, it’s a common misunderstanding that noting a conflict of interest is akin to admitting guilt or bribery or corruption. It doesn’t have to be like this, and this perception exists in large part because so many people try to pass off their COI as no big deal. But the literature has shown, time and again, that it is a big deal, and that no one is immune from the influence that things as little as pens or as big as unrestricted checks can have on perceptions. If you-the-scientist want us-the-reader to give weight to your opinion paper that, say, Ebola might mutate to become airborne and ZOMG, then perhaps you-the-scientist should give weight to the multiple peer-reviewed papers that say your center funding presents a conflict of interest that requires a necessary disclosure.

Amazon’s “Toxic Culture” Doesn’t Come from My Needs as a Customer

Oh Internet, I tire. I really, really tire of reading rapidly tossed off think pieces that want to make broadly declarative statements as if they were the first to ever encounter such an idea. For example, did you know “we like-we really, really like-to get things cheap”? Annalisa Merelli wasn’t sure you were aware of this, so she–along with too many other think pieces to name–decided that the New York Times’ article about Amazon’s toxic work culture was the perfect time to place the blame of that culture squarely where it belongs: on the consumer. Which is a bit of an interesting claim, since, as the Seattle Times noted–and they’re a good paper to note this, given their proximity to the tech industry in the last forever–pretending that Amazon’s “toxic culture” is something new and unique to Amazon is ignoring the history of the tech industry as a whole, which has long been noted for a toxic culture that grinds up and spits out contractors and employees as fast as it can hire them. The toxic culture at Amazon isn’t because of the people buying Method cleaner and cat food, Mr Clean Magic Erasers, razors, the occasional bed sheet set, or Dutch oven–it’s from the tech industry as a whole.

amazonprimeIt fascinates me that people want to jump on the Blame Prime Members bandwagon in their think pieces, rather than look at what it is Prime is offering people: dependable, rapid access to a wide variety of goods and services. I mean, I can’t imagine why a perfectly able-bodied society where everyone has a car and access and a well-paying job and plenty of time, and can buy completely ethical, fair-trade food and clothes and goods and whatever else they need or want whenever they want would find a service like Amazon Prime useful.

…was the sarcasm too thick there? It’s been a bit of a morning.

It’s not that it surprises me that a gaggle of able-bodied writers would overlook the ease and convenience and accessibility of Amazon Prime for those who have physical disabilities; I think those of us who are disabled are rather accustomed to society erasing us. It does, however, surprise me that they’re so quick to overlook other members of society: working parents, single parents, folks who live far away from shopping centers where they can find both clothes and hardware and home goods. Not everyone lives in a suburban landscape where Target is 15 minutes in one way and Home Depot 10 the other; even those who do often don’t have the time to run to every single individual store. Maybe their commute takes hours every day; maybe they have children and the sorts of schedules that are full of soccer practice and school and camp and who knows what else, because I’m not a parent but I certainly remember being a kid and having siblings and the “go go go okay everyone collapse and sleep” aspect of a full household. Some folks live an hour or more from services, either because they’re in the middle of a mega-city and these big boxes are on the outskirts and difficult to reach, or because they’re in the middle of a rural area and there isn’t enough population density to support many stores. Maybe they live in that perfect suburban area with a perfect suburban life and car and they’re foiled by working non-standard shifts.

Of course, all that presumes we’re talking about people with cars, and a lot of folks don’t have cars, for reasons as diverse as being unable to drive to being unable to afford the costs of owning a car. For these folks, public transit–not the best thing even in the best cities with public transit–limits their options even further. That’s extra time commuting, time on the weekends, time you could be spending doing laundry or working or being with family or resting or fill in this blank here. Relying on feet, bikes, and public transit is possible for many things, and people do it in cities around the world-and in those same cities around the world, the people who can afford it have their laundry taken out and their food brought in. Amazon merely offers an equalizing aspect to at least some of that (it’s not doing my laundry yet, anyhow).

And yes, for those of us with disabilities, Amazon, and Prime in particular, can be a life-saver. Or at least a life-enricher. There’s no fighting mobility issues in a store, no navigating canes and walkers and chairs around clueless people, no having to figure out how to get a disabled body to the store (especially if your disability doesn’t allow driving). There’s no worry about lifting things that are too heavy, no calculus around what you can carry and what you need and whether it’s worth it to hurt yourself in the short term so that you don’t have to go out again two days later.

For everyone, whether they’re a stay-at-home mother juggling triplets and exhaustion or a busy professional or a disabled lawyer or any other combination of Person you can hodgepodge together from the mass options available, Amazon offers convenience and dependability: you can order what you need and get a dependable timeframe for when you’ll get it.

All of this? Not the fault of Amazon. It’s the fault of a culture and society that isn’t set up to include the different, the ultra-busy, those on different shifts or without flexible schedules, or yes, the disabled. So by all means, yes, take Amazon and society to task for not taking care of people, be they employees or customers or citizens. But don’t take people to task for utilizing the services offered to them–services often available to folks in mega-cities with the income to support said secondary delivery services–so that they too can maximize their time and priorities. And key to this is letting the individual decide what’s important to them: for example, over at USA Today, Amazon Prime member Jefferson Graham decides that

after reading this piece, I can wait. I don’t care if a new lens for my camera takes two or three days, or even a week to get to me. I don’t need a drone to whisk out a package from a warehouse and get it to me pronto. I want the company I’m dealing with to treat the human beings who work there with respect, not force them into a climate of fear.

Cool beans. Immediacy doesn’t mean much to him, and from all accounts he is able-bodied and able to patronize other shops when he does have an immediate need, so he can decide that this is not a participatory system he’s okay with, so he’ll opt out. But you cannot hold everyone to a standard set by an able-bodied, well-employed white man. Ability-and responsibility to a broader ethos-is going to look different to different people; the priorities of an able-bodied driver who lives in a small city will be different than a disabled person living in a mega-city.

Folks want to dovetail this into arguments about conscious consumption and ethical purchasing, which is a good conversation to have: but also a brutal one, because as Emily Finke noted, this practice often takes free time, significant money, and mobility for accessibility–and we’re back to leaving a lot of people out with that equation. We’re also left with at the conundrum that many people simply do not want to face: if you’re living in America, your entire existence is pretty much predicated upon exploitation: your food, from produce to protein; clothing; electronics; oil. It is a culture built upon the exploitation of others.

Means&AbilitiesOnce you understand that, you can start taking steps that work within your life to minimize exploitation of others while meeting your basic needs: consume less, buy with mindful awareness, decide where your priority is. Do you want to focus on avoiding sweatshop-sourced clothing? Do you want to eat locally and ethically? Does something else float your boat? Okay then–go for it. But again, this is a matter of balance and individual preference, and the vast majority of us do not earn the money that would be necessary to make ALL the changes, from non-sweatshop-sourced clothes to perfectly ethical and humane and local food to renewable energy and more. So we look at our circumstances, and we decide.

I am disabled, and my mobility limited. I don’t drive because of this. And for me, I balance ethically sourcing my food with my desire to have a life that’s about more than trekking via transit and foot to different stores to procure what my cats, my husband, and I need to live a healthy life. Amazon, and Amazon Prime, thus suits a necessary need that no one else in society has met.

Rather than cast aspersions on the consumer within the culture, start looking to the culture itself for change–and demand those changes come from those most, rather than least, able.

Note: this post is based on a casual series of tweets this morning that blew up like whoa. You can read the thread and chaos starting here.

The Arrogance of Mitch McConnell and Friends– Or, Flaws in Assuming You Know God’s Will

Maybe it’s all part of a great big ineffable plan. All of it. You, me, him, everything. Some great big test to see if what you’ve built all works properly, eh? You start thinking: it can’t be a great cosmic game of chess, it has to be just very complicated Solitaire. And don’t bother to answer. If we could understand, we wouldn’t be us. Because it’s all — all — ”
INEFFABLE, said the figure feeding the ducks.

-Terry Pratchet and Neil Gaiman, Good Omens


As you probably know, I’m religious–Tibetan Buddhist, to be precise–so I do understand the idea of following religious moral rules even if that puts you sort of outside lockstep with modern society. I tend to view religion as a separate (complimentary) sphere to say, science. And while we do things differently across the international religious dateline, I know that a lot of Christian-variations feel the same way.

Part of the reason I know this is because I was raised Catholic.

And that’s why the arrogance of modern Christians is often breathtaking and baffling to me, that they think they know God’s will to the point they’re willing to legislate it. I mean, the last I looked, there were at least six different variations on what you could argue was God’s effort at the clearest commands, the 10 Commandments, which between Exodus and Deuteronomy actually come out to more like 17 Commandments.

But somehow they absolutely 100% know God’s word on fetal tissue used in research.


When I was a kid, and Mom was still trying her best to raise me as a Good Catholic, I had a book called something like Why Does God Allow Bad Things to Happen. It was not, as I recall, Catholic-specific, but non-denominationally broad and probably bought as a form of self-defense.1

BankRobberThe book was full of examples of bad things God allowed to happen, and asked questions like “if God doesn’t want you to rob a bank, why doesn’t he just put a giant bag over the bank every night to keep everyone out?” and it was illustrated with something like a Ziploc dropped over a cartoon bank, and a cartoon robber trying to figure out how to get past it.

The answer was always a variation on a two themes: free will and the ineffable nature of God. In short, God wants us to have choices and for those choices to be made with the guidance of his wisdom for the circumstances of our lives, and we can’t actually know what God wants from us, or anyone else, because that Plan is ineffable–literally unable to be known by mortal minds–so we just do the best with the circumstances in front of us and trust that God will trust us, too.


It seems to me the height of conceit and arrogance to assume a mortal human could understand the will of God, let alone be able to perfectly apply that will to modern life. If you believe, after all, that God can speak to you, where the N of you is Very Quite Large, then why couldn’t God simply reach into the mind of everyone and speak to all at once? Why are some people the special folks God speaks to–not really a question in Catholicism, which has its hierarchy of chatting, but a big, big issue in Protestantism, which holds that everyone has equal access to God.

The minute you start hearing God tell you things, you’re removing yourself from that equal access situation and insisting God has spoken to you and only you in mysterious ways.

What especially boggles me is this: say Marco Rubio continues his NO ABORTION EVER rhetoric, and continues to insist that this is because he knows God’s will. What’s to stop someone else from coming up and saying “sorry, but God spoke to me and said that abortion is okay, because it’s one of his tools for teaching–people learn different lessons from abortion, and hey, it’s also how he gets necessary donated tissues to researchers who will cure all kinds of diseases in His name!”

Now you have belief in God’s word being spoken to you in two separate people, with two separate belief systems, and…there’s no way to balance out who is right or not, short of God actually speaking to the entire world at once.


Of course, none of this is really about religion. If it were, Mitch McConnell and his Republican cronies wouldn’t have voted to lift a moratorium on the use of donated fetal tissue from voluntary abortions in 1993. Yet many of the GOP members who voted for that medical research are now speaking out against Planned Parenthood, and it’s not because they’ve gotten more religious in the last 23 years. It’s because we’re gearing up to what is going to be a very contentious election cycle for the GOP, and as usual, politicians are pandering to the extreme members of their base–the ones who vote in primary elections–in an effort to secure money and, ultimately, nominations.


DrinkThisMuchIn his sign-off from The Daily Show last night, Jon Stewart said “the best defense against bullshit is vigilance. So if you smell something, say something.” You have to decide what your own olfactory tolerance is, but at least for me, when people begin talking about the voice telling them to control the actions of everyone around them, I think a lot less God, a lot more charm and kool-aid.2

If nothing else, ask yourself this: when the federal funds Planned Parenthood receives do not go towards abortion, what do Mitch McConnell, Ted Cruz, Rand Paul, and the rest of the GOP politicians gain from defunding Planned Parenthood?