Don’t Ice Bucket

22 August »

I was away from my computer for a while, and returned to find this ice bucket thing blowing up. There are a couple reasons why it’s a bad idea — one obvious, one a little more complex.

The obvious reason: diving into the latest Internet meme is a really mindless way to pick a charity. And in fact, the ice bucket thing started out with no specific charity; nominees could pick their own. ALS is no more worthy than any of the thousands of charities that could have benefited from this meme, and maybe a lot less worthy than most.

This brings me to the deeper reason not to participate: I wrote a few years ago about the problem with disease charities, that they put research ahead of the real needs of people living with the disease on a day-to-day basis. This is true for almost all disease-specific patient organizations, but — it turns out — especially true for ALS.

Case in point: Anthony Carbajal — who has been diagnosed with ALS and made his own ice bucket video. It’s really poignant, and you can tell how scared Anthony is. The fact that people are raising money for the ALS Association– the patient org for ALS — means a lot to him, which is great.

The problem is: it doesn’t do a lot for him.

Look at the ALS Associations financials: last year they raised $30 million, of which $7 million went to research and $5.2 million went to patient and community services — less than half of the money they raised. The latter category almost certainly means money spent for support groups and things like that, and probably zero for actual direct help for patients. Organizations like the ALSA don’t do that, generally.

Meanwhile, Anthony has a page on YouCaring.com, where you can give him money. Anthony may or may not already be receiving SSDI, but if he is, his healthcare is paid for. In 2001, thanks the ALSA lobbying, Congress passed a law that allows ALS patients to enroll in Medicare as soon as they start receiving SSDI payments. For almost everyone else, there is a two-year waiting period. In 2008, when the ALS had a chance to shape healthcare reform in a way the benefited all sick people –  including people with ALS — the organization sat on its hands. If you have ALS, you have the public option the rest of us don’t have, thanks to the ALSA’s lobbying.

So it makes sense that the ALSA is focused on research: the government is taking care of their patients. Figure 30,000 patients averaging $100,000 in care a year — the government could be spending as much as $3 billion a year taking care of ALS patients. Granted, not all of those will be on Medicare, so maybe it’s more like $1 billion, or half a billion — point being, $41 million is not a lot of money in the grand scheme of things. It is a lot of money for the ALSA, though — which will probably redouble its fundraising efforts next year. Dollars to donuts says the ALSA declares August as Ice Bucket Month from here on out.

But even if the ALSA helps find a cure for the disease this afternoon, Anthony is already screwed. His case has progressed to the point where he is disabled, and this is probably irreversible. It really sucks to be disabled in this country. What is the ALSA going to do about that? Probably nothing. But there are organizations right now working to protect and expand the rights of sick and disabled people.

In Anthony’s case, those organizations are helping him live a better life right now, rather than stringing him along with the promise of a cure. But Anthony — like many of us — is so conditioned by the disease charity industry towards thinking in terms of ‘cure’, that he can’t see anything else.

Giving money to organizations like the ALSA reinforces the ‘for the cure’ conditioning that does so much harm to our understanding of illness as a problem in society. Anthony won’t get his life back with a cure. Most sick people won’t get their lives back with a cure.

Sick or not, we all have to die at some point. ALS might be a particularly bad way to die, but it’s just one of many bad ways. What matters isn’t what kills us, but how we live our lives in the meantime.  We should support the organizations that help sick and disabled people live better, meaningful lives. I don’t think the ALSA is one of those organizations. I don’t think it does much for us, or for Anthony.

So I think it is perfectly reasonable, even preferable, to refuse the ice bucket challenge.

 

 

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Why I Am Not A Spoonie

4 August »

Many of my friends identify as ‘spoonies’ — after Christine Miserandino’s essay, “The Spoon Theory“. I don’t, and for a long time kept that to myself out of respect for the sense of identity and solidarity her essay has fostered. But I think the patient community is robust enough now that we can talk about what that essay does, and what it means, and whether it helps the general narrative around illness.

If you haven’t read the essay, it begins with Miserandino and a friend hanging out in a restaurant.

Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

Miserandino is momentarily at a loss — but she looks around, grabs all the spoons she can find, and presents them to her friend. The spoons represent the energy it takes to get through a day, point being that people with chronic illness find themselves very limited in that department.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.

The spoon analogy is clever; I definitely have days where I count my spoons very carefully. For a five-minute conversation about illness, it’s a very good way to explain some of the challenges sick people face.

The problem is, I just don’t think it’s enough. Not even close.

Spoon theory is a nice conversation to have, but not enough of a conversation. It is too pithy — it only glances against a real understanding of illness. It is too facile, and seems as likely to prevent a meaningful conversation about illness as it is to start one. As sick people, I think we owe it to each other to have honest conversations about our experience, and not tell each other fables.

I definitely see that Miserandino is getting at something universal — or close to — about illness. I think the fact that people with many different diagnoses can identify as ‘spoonies’ is a real benefit from spoon theory. But our conversations as a community have to transcend in-jokes and euphemism. Whether a person has lupus, RA, MS, cancer, IBD, or any other disease, we should be able to see the shared humanity of their experience immediately, without them having to identify as ‘spoonies’.

To the extent that ‘spoonieism’ becomes a clique for sick people, it excludes sick people who do not think of their illness in spoonie terms  — much the same way pinkism excludes patients with non-breast cancers, or Livestrongism excludes those with non-cancer diseases.

And I worry a well person who hears spoon theory for the first time might believe they understand — and sure, they do, a little, but not enough. Spoon theory could easily foster a false awareness about illness, in much the way most people think they know what it’s like to have cancer because they saw it on TV.

Spoon theory hides this truth: a well person will never really understand what it is like to be chronically ill. The only time I could see myself using it — telling a well person about spoon theory — would be to stifle their curiosity about my illness, in situations where I might be uncomfortable saying anything more meaningful.

How we talk and think about our lives affects how we live those lives. When we tell a story that says illness is easy to understand, we could be lying to ourselves about the fact that it takes hard work: compassion, patience, honesty. For “The Spoon Theory”, Miserandino wrote a 2,110 word essay: if that really does capture your experience with illness enough, you should count your blessings. I wrote a 180,000 word essay about my illness, and barely scratched the surface of my experience.

One thing I have learned is that most people do not want to know what it is like to be ill: it is too scary, too complicated, too painful for them. I worry Spoon Theory makes it too easy by glossing over the hard parts, and by using that as our story we are giving up on the compassion, patience, and honesty we deserve.

You might better appreciate my concerns by imagining something like the spoon theory for sexual assault victims: “You only have one fork. You got raped, so I took it away.” Or for racism: “The white people have all the sugar packets and you only get a sugar packet if you behave the way they want you to.” We know better than to try to reduce the experience of rape or racism to a handy metaphor. Why is it okay to do so for illness, an experience just as vast and deep and complex?

In a similar vein, ‘spoonie’ is not a label I want to wear. It sounds too much like a slur — cf. ‘darkie’ or ‘coolie’. I know that being sick sets me apart from healthy people, but here’s the thing: that’s a lie that healthy people tell each other. I’m not deviant somehow from the rest of humanity: being sick is the human condition. Sooner or later, nearly everyone suffers the pain and frustration of a body in decay. The idea that we’re different somehow is their fantasy: I’m not inclined to label myself accordingly.

It is because the experience of illness is so thoroughly human that I think we should tell stories about our illness. For the same reason, I expect those stories to be similar — but I don’t think those stories should be the same. If spoon theory empowers people to talk about their experience, that is wonderful and a huge benefit to the patient community. If spoon theory encourages people to talk about Miserandino’s experience instead, then I see that as a problem.

I don’t begrudge anybody the label ‘spoonie’. If it works for you, great. But keep telling your story, with all the honesty you can spare. It is through stories — not labels — that we can help people really understand what it means to be sick.

 

 

 

 

 

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How Am I Not A Masterpiece?

4 August »

This looks to be a series

monalisa

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I am the Masterpiece

22 July »

I had a frustrating conversation with my physician today, specifically his reluctance to prescribe a medicine (LDN) that I think might be really helpful for me. I think my frustration boils down to a lack of ambition on his part: he doesn’t want to try anything that he perceives as unusual or not normal, which I understand. The problem is that I am unusual and not normal, by any reasonable medical criteria, so he is basically telling me doesn’t want to deal with me. Anyway, this…davinci

I really hate that whole ‘medicine is more art that science’ trope. It lets doctors hide their ignorance behind the idea that medicine is somehow too fuzzy for mere mortals to appreciate. If medicine is art, I am its masterpiece — and that’s pretty f—ing sad.

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Why I Am Not A Supermodel (NSFW)

4 July »

I have a confession to make: I’m kinda hot.

I ugged up my profile pic over there just so people I work with wouldn’t recognize me, but I’m a lot better looking in real life. On a scale of 1 to 10, I would say I’m a ‘modest 8′ — which means I tell people I’m a 7 just so I don’t seem arrogant, but they know what’s up just looking at me.

That said, I will never be a supermodel. Number one, I can’t build up enough muscle to give me the body for it.

Number two, I shit in a bag.

So when one of my Facebook friends shared pictures of Bethany Townsend, I was grateful. This is her rocking a bikini:

slide_356430_3923211_compressed

It is awesome for someone like me to see someone like me being honest about her body. I appreciate her courage, and applaud her advocacy for people with ostomies and bowel disease.

But by the time the ninth or tenth person shared it, I felt the need for a reality check.

None of this is intended to undermine what Ms. Townsend has accomplished with her honesty. None of this should be interpreted as criticism of her. Rather, it’s to help people who are seeing an ostomy for the first time understand what they’re seeing and respond appropriately.

First, most people are calling what she’s wearing — not the bikini — ‘colostomy bags’. That is probably not correct, even though that’s what she calls them on the original Facebook post. But the bag on her right is probably draining her ileum, which makes it an ileostomy bag. Most times, the actual equipment can be used on either an ileostomy or a colostomy, but just because you can wear socks on your hands doesn’t make them mittens. Also, manufacturers usually refer to their products as ‘ostomy pouches’ — not ‘bags’.

The smaller pouch on her left is probably draining a fistula; the technical term for a bag that size is a stoma cap. They’re designed to collect mucus and let gas escape (through a charcoal filter!), but not to collect any significant amount of poop.

Of course, we could avoid this quibbling by calling them ‘appliances’. This has the advantage of being descriptive enough without being pejorative. After all, we don’t call wheelchairs ‘useless-legs carts’; we don’t call eyepatches ‘enucleation flaps’. It makes me uncomfortable when people refer to my appliance as a colostomy bag — which is technically correct, because it drains what’s left of my colon. I strongly prefer ‘appliance’, or ‘ostomy appliance’. It’s unfortunate that Ms. Townsend has been taught to call her equipment ‘colostomy bags’, but the publicity she’s gotten doesn’t make the phrase any less stigmatizing.

Second, this isn’t the first time a model has exposed an appliance. Way back in 2008, the Colon Club — yet another cancer club — decided to show models with appliances in their annual ‘Colondar’ calendar. Here is Mr. May, Henry Yu, and Ms. December, Heather Maes; it was a little controversial in the appliance-wearing community at the time, if memory serves, but most people found it inspiring.

08may

08decThird, just because someone got pictures taken with their appliance does not free all appliance wearers to wander around with their appliances in the breeze, no more than Eric Weihenmayer getting guide-dogged up Everest makes all blind people mountain climbers. Also, appliances are ugly — they look like medical gear, not like anything a person would wear if they had a choice.  If somebody made appliances from silver mylar, or carbon fiber, or printed Banksy art on them, I would be much more likely to wear that in public.

And none of them are really opaque. So while you may celebrate the courage on display in these photos, but in real life I think you’d find the appliances a little unpleasant, if not offensive. Reason being, in all these photos the actual bags are empty. It’s not the plastic that’s stigmatizing: it’s the shit. And the reason we need the plastic is because we can’t control the shit.

Now for the NSFW part: this is what my appliance looks like loaded.

appliance

Would Ms. Townsend’s photos would be so popular if they showed her appliance full? I doubt it. It is the fact that people with ostomies have little control over their bowels that keeps us stigmatized — not the medical equipment we have to wear. Until it becomes okay to poop in public, that is never going to change.

Fourth: even if we could somehow overcome our disgust of people shitting in public, thereby allowing people like me to expose our appliances — that isn’t liberation. It’s accommodation. It’s a stopgap measure, until we can do better. Ostomy, as a surgical procedure, is a stopgap measure for people who would die otherwise. I’m convinced that 100 years from now it will seem crude and barbaric, but in the meantime, it’s what we have.

Liberation for people like me means giving us back control of our bowels. Whether it’s a device or a procedure or a medicine, it has to be something that gives us the confidence to not need any appliance at all. For many people, that’s a Koch or BCIR or a J-pouch. As someone with active Crohn’s, Ms. Townsend is not a candidate for those procedures. Neither am I.

Until something better comes along, neither of us is going to be a supermodel.

 

 

 

 

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Never Surrender

28 June »

A couple of posts came across my FB feed this week:

Ilana Jacqueline on Huffington Post: 5 Ways You’re Not ‘Living’ With Chronic Illness

 Chronic illness is not cancer. You don’t “fight” it. You don’t “beat” it. You don’t make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don’t use the word “cure” to mean “treat” we can’t use the word “fight” to mean “deal with.

Selena at Oh My Aches and Pains: Graphic: You can live with chronic illness and be…

You can live with chronic illness and be happy
or you can live with chronic illness and be angry.
Either way, you’re still going to be living with chronic illness.

I probably wouldn’t have blogged about these, except that they both showed up the same week. They are not bad advice, especially if you are struggling to come to terms with your illness, but there is something here that bugs me.

Both of posts take chronic illness as given: as something that just happens to a person. Both posts argue, more or less, not to worry too much about your illness, but try to find life instead.

The problem is that both posts conflate illness with disease. There is a big difference. My disease is what it is; there’s not much I can do about it. I have to manage my disease, and live my life around it.

My experience of illness, however, is something I can change, something I can fight.

And a lot of my experience of illness has to do with how others, and society more generally, understand my disease. I didn’t get fired from a summer job because of my disease; I got fired because of my illness. I didn’t struggle in school because of my disease; I struggled because of my illness. I haven’t spent my life scrambling for health insurance because of my disease — but because of my illness.

And to the extent that illness is an experience created by society — by people who often have a lot of prejudice and suspicion of people with diseases — is that something I should just live with? Why wouldn’t I be angry? What good does it do me to pretend I’m happy?

For an uncomfortably extreme analogy: can you imagine trying to tell a black American circa 1830, ‘You can live with slavery and be happy, or you can live with slavery and be angry. Either way, you’re still going to be living with slavery?’ Yes, there were probably slaves who somehow managed to transcend their awful circumstances and be happy. But instead of trying to convince slaves to choose to be happy, doesn’t it make more sense to just end slavery?

Chronic illness is not the same as slavery. But there is a lot about the experience of illness that is informed by decisions healthy people make for and about us — which tend to be pretty bad, all around. And to the extent that our diagnoses give healthy people license to make those decisions — to discriminate against us, to profit from us, to ostracize us — we are not exactly, entirely free.

I used to struggle with my disease. I used to hate myself, hate my life, be angry about my diagnosis. It took a long time, but I came to terms with it. I am okay with my disease. It sucks, but it is what it is. And yes, every sick person needs to go through this process, to learn to accept and manage what they cannot change about their lives.

But I discovered that coming to terms with my diagnosis didn’t make me okay with my illness. I discovered that a lot of what I thought was my disease was really the product of other people’s bad ideas about illness. Whatever progress I have made, there are still a lot of people who haven’t come to terms with me.

So yeah: I’m fighting chronic illness. I’m still pretty angry. I’m never going to surrender.

 

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It Is Time To Fix Our Homophobic Restrooms

3 June »

As gay marriage enjoys victory after victory, sweeping across this nation like a plume of rainbow confetti, it is now high time for us to confront another relic of our society’s long disgraceful tradition of homophobia.

I speak of our public restrooms.

By ‘public’, I mean not only those maintained by public agencies, but any restroom generally available to the public: in gas stations, restaurants, shopping malls, banks, and so on.

You may have noticed that in nearly all of these restrooms which hold more than one toilet, the walls that separate the sitting toilets from the rest of the restroom are incomplete. They stop a foot or so off the ground, offering anyone who wishes to peek a look at the feet and legs of the stall user.

The only logical reason for this is to prevent people from doing weird stuff in the stalls: specifically, gay sex.

There is no benefit at all to restroom users in this arrangement; in fact, it guarantees a certain awkwardness in public restrooms. The only possible reason for imposing this discomfort on restroom patrons is to expose their behavior to public scrutiny and moral norms — namely, homophobia.

Ironically, as we saw in the Larry Craig case, the bottom gap in some cases facilitates gay liaisons. I wouldn’t vote for Larry Craig if he was running against a Hitler clone (I’d stay home), but I do firmly believe that what a person or persons do in their stall should be their business, and theirs alone. That would be true in a pragmatic sense if the bottom gap were eliminated.

Even if preventing gay sex were still a priority, the wall gap makes public restroom use potentially humiliating for nontraditional restroom users: that is, those who do not sit on the pot to do their business. The bottom gap makes our deviation from bathroom norms all too obvious to any passers-by. Whether you squat, stand, or empty, the fact that you are not sitting is obvious to anyone wishing to look under the wall.

I am sure some people will protest that partial walls are easier to clean. But in Germany, full walls are the norm — and you’ve never seen a cleaner public restroom than a German public restroom. The privacy one enjoys in a German stall is the mark of a civilized people, and something we should emulate.

Full wall stalls are a symbol of tolerance and acceptance: it is high time America shed its vestiges of homophobia, and close the gaps in our restroom stalls.

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Which Minorities Report?

2 June »

From Fast Company‘s profile of The Minority Report with Larry Wilmore, the show that will replace Stephen Colbert on Comedy Central:

The idea is for the group to reflect a range of points of view. “It’s not being done right now in late night–a panel of diverse voices, a panel of underrepresented voices,” says Ganeless. “This is the African American point of view, the female point of view, the Latino point of view, on all issues of the day. It’s holistic–it’s not just about looking at a black point of view and black issues. It’s giving these underrepresented voices an opportunity to be heard on all issues. That array of voices will be a big part of the show.”

I can’t help but wonder if disabled or chronically ill people are on their radar as an underrepresented voice. I’d love to see some funny sick people on TV.

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How Rom-Coms Killed Elliot Rodger (and six other people)

30 May »

So another guy with a tiny pecker killed some people, which really is not that big a deal in this country, except that this time he blamed women and now is the poster-child for rape culture. This tragedy even spawned a hashtag, #YesAllWomen, now a cultural phenomenon.

I want to start out very clear: I accept that rape culture exists. Just by way of bonafides: I’ve been sexually assaulted two or three times, and managed to hold on to my last scrap of virginity until my late ’20s. I am a feminist, to a depth that is difficult to explain here. This is not a #NotAllMen argument, and not at all a denial of rape culture.

I really wanted to get on board with #YesAllWomen: I read everything that showed up on Facebook, looked it up on Twitter, clicked through to read some bloggers on the subject (e.g. Jezebel). I wanted to share the outrage, really I did — but, somehow, the spark fizzled out.

That made me feel like a bad feminist, like I should be contrite for not being 110% #YesAllWomen. The last few days, I’ve spent a lot of time thinking about why that fire won’t take, why I don’t feel upset enough. Eventually, I got around to writing out my thoughts — to writing this post.

Again, to be clear: I accept that rape culture exists. I will keep saying that.

As horrible as this tragedy is, it would be great if it was enough to finally break through, to shatter the prejudices and privilege that feed rape culture. It would be wonderful if Isla Vista was the end of rape culture, and #YesAllWomen was relentlessly driving the nails into its coffin. But I don’t think this is it.

In fact, I don’t think Elliot Rodger is even a good poster-child for rape culture. It’s fairly well documented that Rodger refused treatment for mental illness of some form, which — if it means anything — means we cannot take his reporting of the state of the world at face value. But — and this is important — it also means we cannot take his reporting of his interior world at face value.

The odds are pretty solid that he had much, much more going on inside than just virginal angst and misogyny — but he only told us about the virginal angst and misogyny. So why are we letting him define this tragedy?

Was Elliot Rodger angry at women? Apparently. Are women why he was angry? Probably not. So to say that Elliot Rodger killed people because he was angry at women strikes me as a subtle misdirection.

More accurate then to say he killed people because he was angry, and he blamed that anger on women.  My sense of his mental illness is that he was going to be angry and want to kill people, no matter what he attributed his anger to. He latched onto women, but could well have blamed jocks, Muslims, or the IRS — any of the many stated reasons angry men have shot and killed other human beings recently. #YesAllMuslims would be a good hashtag; #YesAllJocks and #YesAllIRS not so much.

My sense is that what’s going on in #YesAllWomen owes more to a desire to identify with the victims — as defined by Rodger — and not to any attempt to really understand the tragedy. Which is not to say that identifying with victims is a bad thing: empathy is good, even crucial. Just that the emotional reflex (which is good) is not as useful to me (personally) as the task of understanding what has happened.

Insofar as #YesAllWomen represents an enormous outpouring of empathy, it is a great thing. As understanding goes… well, maybe it’s just okay. And I don’t think an outpouring of empathy will help us solve the underlying problem as much as understanding it will.

The problem for empathy is that Elliot Rodger isn’t driving rape culture. He’s absorbing it, channeling it, and acting out its most awful possible consequence. And by pointing to him as the face of rape culture, we risk an easy dismissal by people — men, women — who participate in rape culture but still readily identify Rodger as a bad person. It is all too easy to look at someone in the news and say, ‘Oh, I’m not like that’  — and I mean crazy easy.

Making Elliot Rodger the face of rape culture guarantees that 99.99% of rape-culture participants will never recognize themselves. And, again, we are still letting Rodger define the meaning of his actions, giving him the last word, which is problematic for the ‘why are we taking him at face value’ reasons discussed above.

Again, to be clear: I believe rape culture is a thing. To paraphrase the joke: Believe in it? Hell, I’ve seen it done.

For argument’s sake, let’s take Elliot Rodger at face value.  Here’s the last paragraph of his manifesto — and no, I haven’t read the whole, entire thing:

All I ever wanted to was to love women, and to be loved by them back. Their behavior towards me has only earned my hatred and rightfully so! I am the true victim in all of this. I am the good guy. Humanity struck at me first by condemning me to experience so much suffering. I didn’t ask for this. I didn’t want this. I didn’t start this war. I wasn’t the one who struck first.. But I will finish it by striking back. I will punish everyone. And it will be beautiful. Finally, at long last, I can show the world my true worth.

That first sentence is a killer, isn’t it? He was probably constitutionally incapable of anything like love, and yet that is what he identifies as his sole goal. Over and over in his manifesto, he talks of his jealousy — of guys who have sex, yes, but also of couples out together, relaxing, enjoying each others’ company. He really did want to be loved, even if he had no idea what that meant.

So to attribute his actions to rape culture is — well, what do we mean by rape culture? Objectifying women for sexual purposes? The sense of entitlement that #NotAllMen have vis women’s sexuality? The idea that sex is the ultimate expression of love?

Yes, Rodger wanted women for the sex, but he also wanted an emotional connection, which he called ‘love’. He was horny and angry — but also very lonely. And it’s the loneliness that drove his frustration, as much as the horniness. And the thing is, if we are going to take the rapey parts of Rodger’s worldview at face value, we have to take the lonely parts, too.

What comes through in his manifesto — and keep in mind, it’s a manifesto, not a diary, so past events are colored by his recent state of mind — is that he felt lonely, worthless, and depressed. Once you get past the rapey, vicious, evil parts of his manifesto — his anger, post hoc to his frustrations — you start to realize that he had steep expectations for his love life. He believed that the key to his happiness and self-worth were love, the highest and best expression of which he understood to be sex.

Look at how he talks about the joy and pleasure other people take in coupledom, and his contempt for them as unworthy and undeserving. Look at how he talks about a girlfriend as a status indicator for a healthy, complete, having-one’s-shit-together guy. He believes that love as sex will make him happy: that love will solve his problems. And when he couldn’t make that happen, it made him angry.

Now then: who is telling young men that love will make them happy? That love will solve their problems? Who is telling young men that love completes them, validates them, makes them worthwhile? Because those are the ideas that Elliot Rodger killed for, that he died for.

If you fed every romantic comedy plot ever into a garbage disposal of teenage angst, pathological narcissism, and mental illness, you would get something very like Elliot Rodger’s frustration. He had an ugly, nasty, warped understanding of love, relationships, and his own personal problems. It’s pretty clear that he has literally no idea what love is, even though his suicide note says that’s all he wanted.

You think I’m kidding about rom-coms, but consider the model of agency those films most often depict: women simply cannot help but fall in love. They are wooed until kismet or destiny forces them to accept the inevitable, and they surrender themselves bodily to the male lead. The have no choice, no reason, no decision: they can only follow their hearts, not lead with their minds. They are flotsam in the tides of their emotion.

Put that in the garbage disposal, and this is what you get:

The  ultimate  evil  behind  sexuality  is  the  human  female.  They  are  the  main  instigators  of  sex.  They   control  which  men  get  it  and  which  men  don’t.  Women  are  flawed  creatures,  and  my  mistreatment  at   their  hands  has  made  me  realize  this  sad  truth.  There  is  something  very  twisted  and  wrong  with  the  way   their  brains  are  wired.  They  think  like  beasts,  and  in  truth,  they  are  beasts.  Women  are  incapable  of   having  morals  or  thinking  rationally.  They are  completely  controlled  by  their  depraved  emotions  and  vile   sexual  impulses.

We can blame all this nastiness on Elliot Rodger, and his horribly warped mind, but that presumes the ideas that informed his expectations and understanding of women were good ideas in the first place.  It would be one thing if romantic comedies were showing realistic ideas about love and female agency, but they’re not. Elliot Rodger did not invent his insane expectations from thin air.

Are rom-coms part of rape culture? I am perfectly willing to stipulate, but let’s be clear that it’s definitely #NotAllMen keeping the Rachel Macadamses of the world in business, or driving the market for Nicholas Sparks movies. And to be fair, it’s not just romantic comedies — it is our whole pop culture understanding of romantic love. Songs and TV shows and novels, all the way back to Pride and Prejudice, maybe even Shakespeare. It’s also worth noting that plenty of popular dramas endorse violence as an expression of romantic love.

What you get from that understanding of love is the conviction that if you are just the best person you can possibly be, someone will fall in love with you — like flipping a switch — and you will be happy. And that’s bullshit bullshit bullshit.

The most obvious conclusion from his manifesto is that nobody taught Elliot Rodger a single useful thing about love. Maybe he was incapable of learning, maybe nobody even tried, or maybe he just got overlooked. But Rodger desperately desired to love and be loved, without ever understanding what it is he wanted, or why his understanding of it was false.

The irony is that if Rodger had been able to have sex — key to his understanding of ‘love’ — he would have found it solved no problems at all. And his anger would turn to something else — probably, in all fairness to #YesAllWomen, to his sex partner. But maybe to Muslims or the IRS. But he was still a virgin, and didn’t know that his idea of love was not the panacea he sought.

Rodger’s frustration was the result of him taking literally our collective cultural misrepresentation of love. What our culture says about love is unrealistic in the best case, impossible in his. All he ever wanted was for love to solve his problems, and he never understood that it couldn’t.

I say this as a happily married man, with more than his share of problems: love didn’t solve many of them. Love wasn’t some switch I tripped in my wife, it wasn’t some destiny we both surrendered to, it wasn’t some ocean we drowned in.

Love was a decision we made to each other. Love is a verb. Love is work.

Love is work I do every day of married life. Love is the labor that kept my parents together through rough times, and it is the effort that binds every married couple I know well enough to say. They might be ‘in love’, but that hormonal fugue does not do the work of love for them.

There are very few movies where two people decide they like each other enough to work on their relationship over a period of decades, building and binding their lives together though the daily, deliberate — and sometimes frustrating — labor of love. I can’t think of one, and it’s a safe bet that neither could Elliot Rodger.

Rape culture doesn’t explain why Rodger was unhappy, but it did give him a target for his unhappiness. Rodger believed that love (as sex) was some magical power that women would shine on him, even as they aren’t in control of it themselves. His frustration at learning that was not true drove his anger, and rape culture allowed him to focus than anger on women.

Yes, I believe rape culture is a problem — a massive problem, one that we as a society need to solve. But rape culture is not the problem that drove Elliot Rodger to his crimes. He only used rape culture to justify those crimes.

If we accept Elliot Rodger’s manifesto as useful insight into his psyche — even though I am leery of taking it at face value — we find that what drove his anger was his inability to love and be loved, based on a horrible, distorted understanding of love. Elliot Rodger did not know love, did not know how to love, did not understand love — and that helped make him a monster.

But the misunderstanding that informed Rodger’s anger isn’t strictly rape culture; it’s pervasive in our society. So maybe his first fatal mistake was to believe the lies we tell each other about love.

I don’t see how #YesAllWomen addresses that problem. It’s not a women problem. It’s not a men problem.

It’s a human problem.

[Edited to add:

I should point out that if Elliot Rodger is a poster child, he is a poster child for mass shootings. The idiosyncratic reasons for this particular shooting -- rape culture, rom-coms, whatever -- end up being less important to the problem of mass shooting than the general problems that characterize most such shootings: access to guns being chief, and untreated mental illness being secondary. Where mass shootings are concerned, access to guns and untreated mental illness are both far more important than rape culture.

Which is not to say that rape culture causes anything less than tremendous violence in its own right: it is a  problem that demands our attention. But it is not the only problem we face, and in this particular case it is not the problem doing the causal work. Rape culture was neither necessary nor sufficient to his actions, so trying to co-opt Rodger as the face of rape culture has too much a sense of opportunism to me. As the lawyers say, tough cases make bad law -- and there is a great deal of complexity to this particular case.]

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Patients for a Moment: Women as Leaders in the Patient Advocacy Movement

19 May »

I am hosting the Patients for a Moment carnival once again, and want to use this month to return to Laurie Edwards’s In the Kingdom of the Sick. – a book that I think is highly important to the chronic illness community. I tried this once before, with mixed results.

This time, rather than having you read the entire book, I want to ask you to read a short excerpt — just 17 pages. In the Kingdom of the Sick will be released in paperback in July, and to mark the occasion Laurie’s publishers have very generously made a chapter available for our community to read and discuss.

Specifically, Chapter 4: “The Women’s Health Movement and Patient Empowerment” — which explains how the women’s health movement fed into and drove the patient empowerment movement. You can download and read the whole chapter here.

I asked for this chapter because it was the part of Kingdom that was least accessible to me. As a non-woman, I don’t quite get the connection between women’s health and my own patient advocacy. That’s not to say I was skeptical, just that I wondered how widely the story Laurie tells resonates. But I am also aware that women patient bloggers outnumber male patient bloggers by something like 100 to 1. Many PFAM editions have been entirely written by women, which makes me think there has to be something important going on.

So the prompt for this month’s PFAM is this: read Laurie’s chapter, think about it, and then add your story to hers. Explain how the women’s health movement affects (or doesn’t) your own experiences as an empowered patient.

To have a blog post included, please send me:

-Your name
-Your blog’s name
-Your post title
-Your post URL

I also want to open this up to patients who might not yet have a blog: if you don’t, and want to participate, send me your response to the prompt in a couple sentences, plus your name as you wish it to appear. I’m reserving the right to edit or condense your submissions, especially if they are overly long.

Submissions are due June 15th. I look forward to your responses.

I’ll be organizing PFAM for the time being, so please let me know if you would be willing to host. If you think you won’t have time, we can probably figure out a way for it to not be so much work. Shoot me an email — thanks.

 

 

 

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