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Well, That Escalated Quickly

This post is probably going to be a little bit scattered, because I’m still reeling from the overwhelming, unexpected response to the last post.  I honestly expected “Inadvertent Algorithmic Cruelty” to be read by maybe two or three hundred people over the next couple of weeks, all of them friends, colleagues, and friends who are colleagues.  I hoped that I’d maybe give a few of them something new and interesting to think about, but it was really mostly just me thinking out loud about a shortcoming in our field.  I never expected widespread linking, let alone mainstream media coverage.

So the first thing I want to say: I owe the Year in Review team in specific, and Facebook in general, an apology.  No, not the other way around.  I did get email from Jonathan Gheller, product manager of the Year in Review team at Facebook, before the story starting hitting the papers, and he was sincerely apologetic.  Also determined to do better in the future.  But I am very sorry that I dropped the Internet on his head for Christmas.  He and his team didn’t deserve it.

(And yes, I’ve reflected quite a bit on the irony that I inadvertently made their lives more difficult by posting, after they inadvertently made mine more difficult by coding.)

Yes, their design failed to handle situations like mine, but in that, they’re hardly alone.  This happens all the time, all over the web, in every imaginable context.  Taking worst-case scenarios into account is something that web design does poorly, and usually not at all.  I was using Facebook’s Year in Review as one example, a timely and relevant foundation to talk about a much wider issue.

The people who I envisioned myself writing for—they got what I was saying and where I was focused.  The very early responses to the post were about what I expected.  But then it took off, and a lot of people came into it without the context I assumed the audience would have.

What surprised and dismayed me were the…let’s call them uncharitable assumptions made about the people who worked on Year in Review.  “What do you expect from a bunch of privileged early-20s hipster Silicon Valley brogrammers who’ve never known pain or even want?” seemed to be the general tenor of those responses.

No.  Just no.  This is not something you can blame on Those Meddling Kids and Their Mangy Stock Options.

First off, by what right do we assume that young programmers have never known hurt, fear, or pain?  How many of them grew up abused, at home or school or church or all three?  How many of them suffered through death, divorce, heartbreak, betrayal?  Do you know what they’ve been through?  No, you do not.  So maybe dial back your condescension toward their lived experiences.

Second, failure to consider worst-case scenarios is not a special disease of young, inexperienced programmers.  It is everywhere.

As an example, I recently re-joined ThinkUp, a service I first used when it was install-yourself-and-good-luck alpha ware, and I liked it then.  I’d let it fall by the wayside, but the Good Web Bundle encouraged me to sign up for it again, so I did.  It’s a fun service, and it is specifically designed to “show how well you’re using your social networks at a more human level,” to quote their site.

So I started getting reports from ThinkUp, and one of the first was to tell me about my “most popular shared link” on Twitter.  It was when I posted a link to Rebecca’s obituary.

“Popular” is maybe not the best word choice there.

Admittedly, this is a small wrinkle, a little moment of content clashing with context, and maybe there isn’t a better single word than “popular” to describe “the thing you posted that had the most easily-tracked response metrics”.  But the accompanying copy was upbeat, cheery, and totally didn’t work.  Something like, “You must be doing something right—people loved what you had to say!”

This was exactly what Facebook did with Year in Review: found the bit of data that had the most easily-tracked response metrics.  Facebook put what its code found into a Year in Review “ad”.  ThinkUp put what its code found into a “most popular” box.  Smaller in scale, but very similar in structure.

I’m not bringing this up to shame ThinkUp, and I hope I haven’t mischaracterized them here.  If they haven’t found solutions yet, I know they’re trying.  They really, really care about getting this right.  In fact, whenever I’ve sent them feedback, the responses have been fantastic—really thoughtful and detailed.

My point is that ThinkUp is a product of two of the smartest and most caring people I know, Gina Trapani and Anil Dash.  Neither of them comes anywhere close to fitting the Young Brogrammer stereotype; they are, if anything, its antithesis, in both form and deed.  And yet, they have fallen prey to exactly the same thing that affected the Year in Review team: a failure to anticipate how a design decision that really worked in one way completely failed in another, and work to handle both cases.  This is not because they are bad designers: they aren’t.  This is not because they lack empathy: they don’t.  This is not because they ignored their users: they didn’t.  This is such a common failure that it’s almost not a failure any more.  It just… is.

We need to challenge that “is”.  I’ve fallen victim to it myself.  We all have.  We all will.  It will take time, practice, and a whole lot of stumbling to figure out how to do better, but it is, I submit, vitally important that we do.

Inadvertent Algorithmic Cruelty

I didn’t go looking for grief this afternoon, but it found me anyway, and I have designers and programmers to thank for it.  In this case, the designers and programmers are somewhere at Facebook.

I know they’re probably pretty proud of the work that went into the “Year in Review” app they designed and developed, and deservedly so—a lot of people have used it to share the highlights of their years.  Knowing what kind of year I’d had, though, I avoided making one of my own.  I kept seeing them pop up in my feed, created by others, almost all of them with the default caption, “It’s been a great year! Thanks for being a part of it.”  Which was, by itself, jarring enough, the idea that any year I was part of could be described as great.

Still, they were easy enough to pass over, and I did.  Until today, when I got this in my feed, exhorting me to create one of my own.  “Eric, here’s what your year looked like!”

image

A picture of my daughter, who is dead.  Who died this year.

Yes, my year looked like that.  True enough.  My year looked like the now-absent face of my little girl.  It was still unkind to remind me so forcefully.

And I know, of course, that this is not a deliberate assault.  This inadvertent algorithmic cruelty is the result of code that works in the overwhelming majority of cases, reminding people of the awesomeness of their years, showing them selfies at a party or whale spouts from sailing boats or the marina outside their vacation house.

But for those of us who lived through the death of loved ones, or spent extended time in the hospital, or were hit by divorce or losing a job or any one of a hundred crises, we might not want another look at this past year.

To show me Rebecca’s face and say “Here’s what your year looked like!” is jarring.  It feels wrong, and coming from an actual person, it would be wrong.  Coming from code, it’s just unfortunate.  These are hard, hard problems.  It isn’t easy to programmatically figure out if a picture has a ton of Likes because it’s hilarious, astounding, or heartbreaking.

Algorithms are essentially thoughtless.  They model certain decision flows, but once you run them, no more thought occurs.  To call a person “thoughtless” is usually considered a slight, or an outright insult; and yet, we unleash so many literally thoughtless processes on our users, on our lives, on ourselves.

Where the human aspect fell short, at least with Facebook, was in not providing a way to opt out.  The Year in Review ad keeps coming up in my feed, rotating through different fun-and-fabulous backgrounds, as if celebrating a death, and there is no obvious way to stop it.  Yes, there’s the drop-down that lets me hide it, but knowing that is practically insider knowledge.  How many people don’t know about it?  Way more than you think.

This is another aspect of designing for crisis, or maybe a better term is empathetic design.  In creating this Year in Review app, there wasn’t enough thought given to cases like mine, or friends of Chloe, or anyone who had a bad year.  The design is for the ideal user, the happy, upbeat, good-life user.  It doesn’t take other use cases into account.

Just to pick two obvious fixes: first, don’t pre-fill a picture until you’re sure the user actually wants to see pictures from their year.  And second, instead of pushing the app at people, maybe ask them if they’d like to try a preview—just a simple yes or no.  If they say no, ask if they want to be asked again later, or never again.  And then, of course, honor their choices.

It may not be possible to reliably pre-detect whether a person wants to see their year in review, but it’s not at all hard to ask politely—empathetically—if it’s something they want.  That’s an easily-solvable problem.  Had the app been designed with worst-case scenarios in mind, it probably would have been.

If I could fix one thing about our industry, just one thing, it would be that: to increase awareness of and consideration for the failure modes, the edge cases, the worst-case scenarios.  And so I will try.


Note: There is a followup to this post that clarifies my original intent, among other things.

A slightly revised and updated version of this post was published at Slate.

Finding My Way

With presentations of “Designing for Crisis” at AEA Orlando and World Usability Day Cleveland now behind me, I’m getting into the process of reviewing and refining the talk for 2015.  This will be my talk at An Event Apart all throughout this year, making me one of the rare AEA speakers who won’t have a brand-new talk in 2015.  (We’ll have a mix of new and familiar faces, as we always try to do, and they’ll all be bringing new material to the stage.)

Even “Designing for Crisis” will have some new aspects to it, as I discover ways to strengthen it and loop in some new thoughts and discoveries.  As an example, I just recently had a great chat with Amy Cueva, who gave me some really sharp insights into how I can share the message even more effectively.  I expect that kind of iterative improvement to continue throughout the year, given how new the topic is to me, and possibly to everyone.  It’s been something of a surprise to have many people tell me it’s caused them to see their own work in a whole new light—even people working in fields where you might think they would already be on top of this.  I’m really excited to bring this talk to people at AEA, and elsewhere as opportunities arise.  I hope it will do some good in the world.

In parallel with that ongoing effort, I’m getting back to writing more than just the occasional blog post.  I’ve restarted work on the fourth edition of CSS: The Definitive Guide—details on that will be forthcoming just after the holidays.  I’m also starting to write down some of the thoughts and approaches in “Designing for Crisis”, as well as some nascent thoughts on network effects, responsibility, community, and guidance.  I’m also trying to teach myself git so I can push out public repositories of my CSS tests and some bits of code I’d like to release into the wild, but honestly that’s pretty slow going, because it’s always a fifth or sixth priority behind my family, working on AEA, refining and rehearsing the new talk, and writing.

(“Bits of code”.  SEE WHAT I DID THERE?)

Given everything that’s coming together, I really am looking forward to 2015 and a return to speaking and writing.  For painfully obvious reasons, I was pretty out of the loop for nearly all of 2014, not to mention the last half of 2013.  I tried to stay up to date, but it’s one thing to be in the middle of things, and quite another to observe things from a distance.  (The mosh pit never looks like it feels, you know?)  So in addition to all the other stuff, I’m working overtime to catch up, and that’s where I could really use some help from the community.

So, tell me: what did I miss?  What’s emerging that I should be (or should already have been) paying attention to, and what am I already behind the curve on?  What has you excited, and what sounds so awesome that you’re hungering to know more about it?  And maybe most important of all, where should I be going to get caught up?

All input welcome, whether here in the comments, or out there on les médias sociaux.  And thank you!

Six Months, Ten Seconds

Six months ago today, our child died in our arms.

I still have trouble believing this.  Kat and I both still have trouble.  But only on occasion, these days, and not for long.  As someone once said, when it comes to the death of a loved one, you don’t get over it, but you do, eventually, if you allow yourself, get used to it.  We’re slowly getting used to it.

Half a year.  It seems like it’s been forever, as if uncountable years have passed since Rebecca died, and yet there are still so many traces and impressions of her that sometimes it seems as if she was only just here.  We struggle, sometimes, to decide what to preserve and what to let go.  We had to force ourselves to put the few boxes of mementoes we’ve kept into storage this past week.  It felt like we were consigning Rebecca to the attic, which doesn’t seem like much when you think about it, but it was in some ways as difficult as consigning her remains to the earth.  For that matter, we were recently making some changes to the family picture wall, and for each picture of Rebecca, we had to ask if it should stay up or come down.  None of those choices were easy, even after half a year.

Of course, half a year is less time than elapsed between her diagnosis and her death.  I remember so much, and so little, of those months.  But this is unremarkable, given that we remember so little of our regular lives.  (Think about yesterday, or of last Friday.  How much of the day do you actually remember?  How many of those several thousand minutes can you no longer recall with clarity?  Now, what else have you forgotten?)

We have thousands upon thousands of images of Rebecca; just in my iPhoto library alone, there are 10,188 photos tagged with her name, 1,624 of which I flagged or rated five stars (or both), 785 of which are on Flickr.  Kat has thousands more, as do so many of our friends and relatives.  Those pictures can take us back, clarify our memories, or remind us of some aspect of her personality.  Myriad facets of a life so short, and yet so fully lived.

Videos are far more rare—the Flickr album has just three—mostly because I greatly dislike shooting video.  In the end, it didn’t matter.  Our friend Jessica captured a video that is the quintessential Rebecca, a near-perfect distillation of Rebecca’s personality in just under ten seconds—all her sass ‘n’ spice, and all her sweetness too.


(Full transcript available at flickr.com.)

Rebecca Alison Meyer, ladies and gentlemen.  How I wish you could have known her as we did.

I laugh every time I watch that video.  Every time.

ardnassaC

May 2014

“You realize this CT could push us out of the study.”

“Yes.”

“Are you ready to face whatever we find out?”

“Of course I’m not ready.  But I will.  We take it a day at a time.  Today she’s okay.”

“Today she’s okay.  Except she isn’t.”

“I know, Kat, but maybe it’s a side effect of the p28.  Or maybe it’s tumor infiltration, or a virus, or who knows what.  She’s been through a lot these past few months.  Whatever’s happening, we’ll find out what it is and deal with it.”


August 2012

“God, what a week!”

“Yeah.”

“It’s not enough that Rebecca nearly killed herself choking on that gum-ball right before we left for vacation.  Thank God Jen was right there to give her the Heimlich!  I don’t want to think about what would have happened if she’d aspirated with nobody around.  And the way she was wailing after the car hit us, I was sure she was headed to the hospital.“

“Me too.  Which I have to say seemed weird, because she was sitting furthest from the impact.”

“I thought maybe the energy from the impact somehow bounced around the car and focused where she was sitting, or maybe she wasn’t buckled in tightly enough.  I thought a lot of things.”

“Yeah.  At least I managed to speed up enough that the impact was behind Joshua instead of right into his door.  I’m not sure the van would be drivable if I hadn’t, and I’m not sure that he’d be out of the hospital altogether.  I just wish I could’ve sped up sooner, or faster, or something.”

“You did great.  Nobody was hurt.  We couldn’t ask for much more.”

“I know.  Still.  I’m not going to soon forget how I felt when I thought Rebecca was seriously hurt.  Like you said, she sounded like she was.”

“Sometimes I think her guardian angel either gets sloppy or works overtime in August.  Remember that bad allergic reaction she had to the sunblock last year?”

“Yes, and I remember how hyper the Benadryl made her.”

“All this stuff that’s happened to her—I just picture her guardian angel sitting in a bar every August going, ‘I kept her safe, now gimme another one!’”

“At least she’ll have some great stories to tell in high school, when they play ‘who had the worst vacation’.”


April 2012

“I can’t believe these things are back.”

“At least this time they aren’t as widespread, and they can be removed laparoscopically.  It was hard enough when you were bedridden for two months when we had only two kids.  With three now, I think I’d go insane.  Especially given Joshua’s disinterest in sleep.”

“I can’t figure out how a baby that young is so opposed to sleep.  He’ll never remember this, and to Carolyn this is just another round of Mommy-in-the-hospital.  But Rebecca is so worried.  Have you seen how clingy she’s gotten with me since we told her?”

“She’s still pretty young.  She’ll adjust quickly.”

“How do we help her do that?”

“The same way we did with Carolyn.  We tell her a hospital is where people go to get better, and that Mommy has bad rocks in her belly that the doctors will take out and then Mommy will get better.”

“You know she’s going to ask us if every rock we go past is a good rock or a bad rock.”

“That’s okay.  She’ll figure it out soon enough, and she’s too little to understand things like tumor growth and how one kind of tissue is good but another is bad.  And one day, when she grows up, she’ll probably chuckle about how she thought Mommy had actual rocks in her belly.”


July 2009

“How’s Kat doing?”

“She’s feeling a little bit better every day.  The infection she got in her incision really set her back, but that finally seems to be cleared up.  We’re hoping that she’ll be able to start walking unassisted and maybe get downstairs in the next week or two.”

“How are the girls?”

“They’re fine.  I think Carolyn enjoys taking her mom snacks in bed, and we sometimes have family dinner up there.  It was a little scary for her at first, but she’s young and resilient.  Rebecca is still Rebecca, crawling and cruising like crazy.”

“You know, I really thought you’d be a widower by now.”

“What?  Why?”

“When we saw those MRIs showing the mass, and then they delayed her surgery for an oncologist to be on hand, I was convinced it was malignant and that she’d die from it and leave you all alone with the girls.  I was sure.”

“Ah.  Well, fortunately, it wasn’t.”

“Seriously.  It was a pretty terrible first birthday present for Rebecca, though, to have her party postponed and her mom in the hospital.”

“I suppose, but she’s so young that she’ll never remember any of it.  Besides, she’ll have plenty more birthdays.”


June 2008

“I know we’ve waited a long time to be placed, but we can’t take a child with cystic fibrosis if we’re not ready to deal with everything that entails.”

“What does it mean if she has CF?”

“A lot of respiratory problems, lots of lung infections, possible lung transplants.  Bottom line?  She’d probably die from it in her teens or early twenties.”

“…I don’t know if I can do that.”

“This could be nothing.  We’ll know by Monday whether she has it or not.”

“If she does, I— I have to turn down placement, Kat.  I’m sorry.  I don’t think I can go into an adoption knowing that it’s time-limited.  I know we’ve been waiting more than two years, but I don’t know if I could survive one of our children dying young.  I’d rather wait longer, and take placement of another baby, than face that.”

“You know some people would ask what you’d do if we’d been able to get pregnant and given birth to a child with CF.”

“And I’d tell them that I’d love and care for that child.  But we can’t get pregnant, and one of the side effects of that inability is that we get the ability to choose which child we take into our lives.  I make no apology for exercising that choice to maximize our chances of having the best outcome.  We’ve done it before, and if need be, we’ll do it again.  I don’t think I can choose to adopt a child with a life-span I know ahead of time to be limited.  Maybe I’m a coward for that, and maybe not, but that’s where I am.”


March 2008

“I don’t get it.  Why do we have to renew our homestudy?”

“They’re only good for two years.  State law says you have renew if you’re still waiting.”

“Yes, thank you, I know that.  I mean, why are we still waiting?  After two years?  We only waited a few months for Carolyn.”

“I know.”

“We’re great parents.  Why are we waiting so long?  What’s wrong with us?”

“Nothing.  You know that.  It’s just, sometimes you wait.”

“Two years, though.  Sometimes I feel like we’re never going to get picked.”

“Sometimes I feel the same way, but you know that if we wait long enough, eventually we’ll be at the top of the list.  And then even if no birthparents actively pick us, we’ll get placed if the birthmother says she doesn’t care who gets the baby.”

“Wouldn’t you rather be picked?  Instead of just placed by default?”

“Honestly, I’m fine with it either way.  I know it’s been a long time.  I know it feels like forever.  But compared to how long we’ll get to be with that child, it’s really not very long at all.  They’ll be our child for the rest of our lives.  We’ll get to love them for decades.  Compared to that, what’s a couple of years?”


October 2003

“I talked to Adoption Circle today and we’re back on the waiting list.”

“Okay, great.”

“They asked how we were doing.”

“What did you tell them?”

“That we were doing okay, and we were ready.”

“Well, it has been four months since Mom died.  It’s sad, but we can’t put our lives on hold forever.”

“That’s basically what I told them.”

“You know, given Mom’s family’s history of cancer, it’s probably for the best that we’re adopting—I wouldn’t want to risk passing that on to our kids.  I just hope I live long enough to see them grow up.”


October 1998

As the funeral service for Kat’s aunt Judy ended, the sun slipped behind a bank of clouds.  The mourners began to disperse, leaving the family to stand in the chill October air, talking quietly as they comforted Judy’s husband and children.  Off to one side, Judy’s mother, Kat’s grandmother, stood stiff and drawn next to me, her eyes glistening with tears as she stared off at the horizon.  I had already expressed condolences and couldn’t think of anything else to say, so I just stood there.  After a few moments, she looked at the grave, then looked at me, and shook her head.

“It’s a terrible thing for a parent to bury a child,” she said.  “Terrible.  Nobody should ever outlive their child.”

Blue Beanie Day 2014

This past Sunday was Blue Beanie Day, the annual celebration of web standards that was established by Douglas Vos, taking as his inspiration the cover of Jeffrey Zeldman’s field-defining book, Designing With Web Standards.  This year’s was the eighth annual celebration, and to mark the occasion, I replaced my purple-infused Twitter and Facebook avatars to sport blue beanies.

That’s how much web standards mean to me.

If you missed Blue Beanie Day—which, it being the Sunday of a major U.S. holiday weekend, many of you may well have—don’t let that stop you!  Drop a cerulean toque on your social-media avatars, make a quick status update about why, and wear your pride in your craft and your love of the web on your sleeve.  Head.  Whatever.

If you don’t have a beanie ready to hand, then here, feel free to use one of these.

image image image

Every day is web standards day, of course, but Blue Beanie Day comes but once a year.  It’s not too late to mark the occasion.  As Ethan says, toque ‘em if you got ‘em!

Apophenia

My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.

—Twitter post, 15 October 2014

Kat and Carolyn were in New York City this past weekend for a brief trip, and when they got back Kat was in a bad way.  I picked them up from the airport and Kat’s symptoms were such that I drove her straight to the Cleveland Clinic ER on suspicion of a cardiac event.  (It wasn’t.)  With the help of friends, I got the kids off to their scheduled activities and stayed with Kat.  By late in the afternoon, we knew she’d be staying overnight, and we decided that I should go to be with the kids.

I gathered up the backpacks and dirty clothes from their weekend trip, slung them over my shoulder, and then stood at Kat’s bedside, holding her hand.  Not speaking, just standing.  Eventually she gave me a small smile and said, “Go on.”

I twitched toward the door, and failed to actually move.  Kept standing.  Kept holding.

“I’ll be all right, Eric.  It’s fine.  Go.”

“I know it’s stupid, but I’m afraid to.  The two times I walked away from Rebecca in a hospital, it didn’t end well.”


We spent our last few hours of innocent ignorance in an emergency room in New Jersey, getting Rebecca rehydrated and hoping to figure out what was going on.  She was so lethargic and tired, and we feared spinal meningitis.  As the day wore on, she seemed stable, neither better nor worse, but one of us had to go get the other kids.  We decided to have Kat stay, since she was the medical professional.  I gave Rebecca a hug and kiss, told her I loved her so much and to feel better soon, and walked out the door.  Not long after that, she had her first seizure.

Just a few months later, after the surgeries and protons and initial chemotherapy and our return back home to Cleveland, Rebecca finally came down with a fever.  It was of course at a time that we could only take her to the ER for evaluation, to make sure she wasn’t neutropenic.  It was evening, and we were hungry, so I went over to the food court while the last few tests were run before they discharged us.  While I was gone, the staff gave Rebecca a routine dose of ceftriaxone, and she immediately had a strong anaphylactic reaction.  We had never known she was allergic to it.  Antihistamines were quickly administered, and she had to spend the night at the hospital in case the reaction flared up again.  It didn’t.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong.

And of course there’s nothing to that but coincidence, but we evolved to spot patterns.  It was a survival skill of the savannah, to see how disparate and apparently unconnected events tied together into a cohesive story.

Now we drag it around with us like a growth that we’ve long since ceased to notice.  We see stories written in the stars and meaning imposed on our mundanity.  The most common question we ask is “Why?”, and that can lead us to wonderful discoveries and insight, but it seems just as often to mislead us into an egotistic reordering of the world.  Our obsessive quest for causes can all too easily cause us to invest in illusions.  That pattern-recognizer that coils through the hindbrain can and does turn on us.

Think of all the conspiracy theories you’ve ever heard or believed.  Think of all the times you’ve heard of something terrible happening to someone and asked yourself why it happened.  Think of all the people who get blamed for what has happened to or even near them, regardless of whether we know all they did or didn’t do.

Think of all the Greek or Roman or any other culture’s myths, the stories where some person draws the notice of the gods, who then proceed to punish them for hubris or mischievously grant their prayer according to its letter but opposite its spirit.  That impulse is no less strong in us.  So many people ask themselves what they could have done differently to avoid their current situation, or what they’ve done to deserve what’s happened to them.

And even our language enforces this view, subtly and persistently.  In the last paragraph, I could have written “So many people ask themselves what they could have done differently to avoid their fate”, but “fate” is a concept born of stories.  It carries with it meanings of destiny, of supernatural forces directing a specific outcome.  I even started to type the word, and then replaced it with “current situation”, which is a far more accurate rendition of what I want to say, but not nearly so poetic.

Not nearly so story-like.

We optimize our language’s patterns to favor the concepts that feel the best to us.  All languages do.  And in doing so, we not only reflect the patterns we see, but reinforce them.  Powerfully.  We reorder the way we see the world, we create patterns of filtering, and when we talk to each other we transmit those patterns to each other, self-reinforcing.

I could say the patterns are living, memetic symbiotes, and thus fall victim to the overactive pattern-recognizer in my own hindbrain.

So we ask ourselves what we could have done to save Rebecca.  I can and do believe as strongly as I believe anything that there was never any hope for Rebecca.  Her genetic makeup, some accident of her conception or fetal development or whatever, meant that she was always going to die of cancer as a child.  We could have tried anything from megadoses of chemotherapy to experimental surgery to the latest woo-woo herbal treatments, and she still would have died.  All we could affect was how long that took, and what her short life would be like as it came to an end.  And we had no way to know which choices struck the best balance of lifespan and life quality.

I like to think that we did well, but for all I know some other set of choices would have given her another six or twelve months with the same quality of life she had.  I don’t know, and I don’t torture myself over that; we did the best we possibly could.  Perhaps that’s me imposing an absent pattern on disparate points of data again, but she did have great quality of life, up until the last week or so, and we fought ourselves to safeguard that for her.  It will have to be enough.

And yet, I still ask myself sometimes if we somehow could have saved her.  If there was a moment when the doctors said X, that we were supposed to do Y instead.  And there’s that pattern-recognizer, affecting our language again: “we were supposed to”.  As if her life was meant to be a long and perfect story, and we were too blind and stupid to see it and fulfill it.  As if we failed to understand what we were supposed to do.

That same impulse is only a short step away from taking responsibility for the cancer itself.  Wondering if we could have avoided the cancer entirely if we’d fed her a different diet, or lived in a different city with different air, or taken a different approach in infant medications, or to vaccination.  Or if we’d been less satisfied with our lives.  Maybe she’d be all right if we hadn’t had the impulse to thank whatever gods or demons might lurk beyond the horizon for our lives that seemed so right, and say no more than that; maybe she suffered for our being humbly grateful for what we had and not thinking that we needed to beg for that state to continue.  Punished for the hubris of believing that our lives were good and in no need of improvement.

“What did I do to deserve this?” it’s so easy to ask.  “What did she do to deserve this?  Why her?  Why us?”

“Why”.  “Deserve”.

Patterns of instinct, encoded in language, enforced in thought, imposed on the world.

Capricious deities, lurking in the clouds.  Heroes and monsters, written in the stars.


Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong in my absence.

So I stood there holding Kat’s hand, wanting to stay with her even if it meant sleeping in a hospital chair all night, because deep in my hindbrain, the pattern-recognizer was screaming that something would go wrong, just like those other times.  That she would die if I left.

I squeezed her hand and gave her a kiss, told her I loved her and to feel better, and walked out the door.

She’s fine.

A New Chapter

Last Wednesday, I stood on the stage at An Event Apart for the first time in almost fifteen months, in front of an audience for the first time in just over a year, and delivered the most important talk of my life.  It wasn’t about CSS, or coding, or even standards.  It was about design and empathy and user experience and my own personal experience and what it taught me.  It was a talk about designing for users who are in the midst of crisis, no matter what kind of content you have, no matter whether you think your users will ever be in crisis when they come to your site.  It was the opening of a new chapter in my career.

To say this is a radical departure is an understatement.  But after the turns my life has taken, it was almost impossible that this would have been anything less.

I don’t know if the audience sensed my anxiety and fear in the moments before I spoke.  I wasn’t afraid of speaking in front of the audience, nor of their reaction to my points.  I was afraid of making my points badly, so that the message was lost in hesitation and stumbling.  I was afraid of fumbling and failing, not because of how I would look in public, but because it would mean doing a disservice to the message I was trying to convey.  And I was a little bit afraid of letting down the team at AEA, who have stood by me and done so much for me.

In the past, I haven’t really rehearsed my talks.  They were all technical, covering territory I knew very well.  The cliché is “Don’t prepare a talk, prepare yourself.”  In other words, know your subject so well that you can just talk about it for an hour.  That’s how I approached all my presentations.  I had high points to hit, slides (or demos) in a certain order, but no actual script.  I didn’t need one.  CSS was so familiar to me, I could mostly improvise what I said.

But this new talk is entirely about territory new to me.  In some cases, it involves things that are new to everyone—ideas I’ve come up with, and techniques I’ve devised, that I’ve never seen before, and nobody I’ve talked to has seen before.  It took no particular act of genius to do this; I just tried to simulate certain frames of mind with software.  The only insight there was to realize that it should be tried at all.

Beyond the topic area, everything about this talk is unusual for me.  I wrote it out as if composing an article, and read the text aloud several times to figure out what had to change.  Once the text was set, I rehearsed more than a dozen times, which partly explains the complete blogging silence of the past month.  I memorized the opening and closing sections of the talk verbatim, going over them in my head before bed, sitting on the plane to Florida, pacing in my hotel room.  On Sunday afternoon before the show opened, I went into the ballroom and essentially gave the talk to myself and the techs putting the lighting and AV together, getting reacquainted with being on stage and throwing my thoughts into the world.

And then, Wednesday morning, after Jeffrey introduced me, I stood center stage, looked out into the audience that held hundreds of my colleagues as well as my sister and parents, paused for a moment… and started talking.

Several people told me they were holding their breath in that pause, wondering if I’d be able to start.  That wasn’t my concern.  My concern was that I would lock up a few minutes in—that I’d stumble, lose my place, and go tharn.  Once I got through the opening and the first screenshots came up, I knew that danger was past.  Whatever else, I’d be able to carry it to the end.  And I did.

As I said before, that talk marked the opening of a new chapter for me.  I’m not abandoning CSS by any stretch, and in fact I’m moving forward on that front as well, but a goodly portion of my energies will be devoted to this new topic.  I think it’s not just important, but vital, and very much overlooked.  I have research to do, ideas to test and further develop, and a lot of thinking ahead of me.  I have this talk to give at An Event Apart throughout 2015.  There will probably be articles, and possibly a book.  Perhaps even more.  I don’t know yet.

What I know is that I’m on a new path now, one I wish I hadn’t come to by this route, but one that I’m determined to follow.  I hope to take what I’ve suffered and forge it into positive, lasting change—not just for me, but for the profession and medium I still love after all these years.

March 2015
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