Month: December 2019

This week’s “things that just look like things that are handy but are actually accessibility devices too” is “gift bags”.

I love wrapping presents. Dad taught me how, and Mom and Nana gave me tips as well, and I’ve been wrapping presents since I was, like, seven. I love giving gifts. I love finding things. I love goofy wrapping paper.

I am not so fond of the severe back and hip pain that results from leaning over a card table for a few hours wrapping gifts.

I did about an hour of research online to find out whether “gift bags as accessibility tool” was intended or accidental, and to be honest, I couldn’t find it. (If I hit the library I’d probably have a better shot, but it’s vacation week and I’m not leaving the couch.). I can tell you the Hall brothers invented today’s wrapping paper. Hallmark introduced gift bags in 1987 and they indicate that gift bags have been the most popular wrapping method since, but they don’t say whether they invented gift bags, or whether there was a particular reason or story behind the bags.

The fabric gift bags I use are:

• adorable (and seasonable if that’s your thing)
• reusable (lowering the cost from “buy a ton of wrapping paper and tags” to “buy a 100 pack of paper gift tags and just tie fresh ones on every year”, and probably better for the environment)
• much faster than cutting and measuring and all of that
• pain-free (assuming that bending over a table to wrap things, or standing, or stretching your arms out for significant periods of time are pain-causing)
• able to be used by anyone who could wrap before, and also by a bunch of people who can’t wrap presents because it’s just not physically, mentally, or  geographically feasible. (Not all of us have room to wrap presents, especially in, say, dorms.)
• Way faster than wrapping
• An easier skill level to master than the act of wrapping gifts. (Not all of us have the skills to wrap something other than a rectangle, and for that matter, not all of us are very good at wrapping rectangles. Not all of us were taught how to wrap at age 7 by my dad, apparently.)

What’s this got to do with the web?

Well, there are some folks on the web (who I’m not going to link to because they don’t need the attention) who believe that “accessibility” and “aesthetics” are polar opposites, and that it’s our job as designers to compromise between the two. They encourage us to drop our accessibility standards when aesthetics are on the line.

And that’s bullshit, which of course you already know.

When we make something accessible, we do make something different from a less-accessible option. No one’s going to argue that wrapping paper and gift bags look the same. For that matter, there are some people who may value a wrapped gift more than a gift in a gift bag, and I’m not saying they’re wrong. It takes more work, more skill, and more time to wrap in paper than it does to drop something into a bag.

Some people may value gift bags more than wrapping paper. Gift bags have less environmental impact, are less likely to tear during transportation, and accommodate almost every shape or size of gift.

When we’re measuring the success of a particular process or project, what’s appropriate really goes back to the goal. The intent of wrapping gifts, regardless of the method, is to obscure this object from view using something more aesthetically appealing than a cardboard box or plastic shopping bag.

Both wrapping paper and gift bags hit the goal.

Gift bags do so in a way that’s accessible to more people more of the time than wrapping paper does.

Accessibility and aesthetics aren’t polar opposites. They’re both tools that enhance usability.

I’ve written before about the core heuristics I generally use for design. Two of those heuristics are very frequently at odds: learnability and efficiency. Someone who knows nothing about your system may need you to take it slow so they can learn it. Someone who knows everything about your system may need you to get out of the way with instructions and explanations so they can get their work done. That doesn’t mean the two heuristics are polar opposites; it does mean that both of them (and the rest of the set) need to be accounted for in the design.

The same is true with accessibility and aesthetics. Making something accessible and aesthetic isn’t a compromise, and shifting a product closer to accessible doesn’t mean it’s further from aesthetic, unless you’re a lazy designer or your definition of aesthetic is so narrow-minded that the eye of a needle resembles a chasm in comparison.

Gift bags come in dozens of styles from decorated paper bags that look like magazine covers to mylar-style shiny bits to modern fabrics to burlap country styles.

They also come in different levels of accessibility from “pull one ribbon to close” to “pull both of these ribbons at once” t0 “oh this doesn’t close at all” to “these instructions are intense”. But that accessibility doesn’t map back to aesthetics.

They’re yet another example of accessible solutions to problems being so mainstream that people don’t see them as accessibility devices.

I wrote a nice little rant in my head before getting out of the hotel shower this evening about how designers who force you to get in the shower to use the controls should be left in the Siberian tundra in winter with wet hair.

Then as I was getting out I discovered the glass panel is on a giant hinge. ^[1]I’m not convinced this actually fixed the problem as the toilet seat is higher than the glass panel so it’s not like it’s easy to get in there anyway. 

AFFORDANCES, PEOPLE. LIVE THEM, LOVE THEM, AND MOST OF ALL, USE THEM.

My husband Nathaniel has cystic fibrosis (CF). It’s genetic. It’s an autosomal recessive disorder–you have to have two copies of the gene to actually experience the symptoms of cystic fibrosis. Carriers, like his parents, have no symptoms.

When Nathaniel was 10, scientists found the gene that causes cystic fibrosis. The CF community was ecstatic–it was a major breakthrough hailed to usher in a new world of gene replacement and bring a cure in 10 years.

But every year from that point forward we have still been “10 years away” from that cure.

Nathaniel and I started dating in high school.

When I was at Millersville University (in 1995-ish), my biology professor told me that my boyfriend should be “allowed” to die because nature never intended for them to live. He didn’t account for the fact that the cystic fibrosis mutation is protection against cholera, and the same mutation that is fatal to Nathaniel likely saved the lives of Nathaniel’s carrier ancestors.

When we were in our 20s, the median age of death was early 30s. When we reached our thirties, it has moved to 35. A baby born with cystic fibrosis in 2018 was predicted to have a median age of death of 44. For those who died in 2018, though, half were under 31.

On October 21, the FDA approved a breakthrough drug therapy by Vertex call Trikafta. The treatment consists of three drugs: one re-folds a protein produced by the cell to move chloride ions in and out of the cell wall. The other two make sure that protein reaches the cell wall to do its job. When Nathaniel takes these drugs, they literally reconstruct the mechanics of every cell in his body. Every. Cell.

There are catches, of course. The treatment only works for certain CF mutations, so 10% of the patient population can’t use it. Others have too much liver damage or may experience liver damage from the drug.

Assuming it works as designed and the side effects are not horrific, this is the cure we’ve been waiting for.

***

Sunday, 60 Minutes ran an episode on George Church, a Harvard geneticist whose numerous goals include  an end to aging, making all humans immune to viruses, bringing the mammoth back from extinction, and create a dating app that would prevent you from dating someone if you’re both carriers for a genetic disease.

Scott Pelley: You’re suggesting that if everyone has their genome sequenced and the correct matches are made, that all of these diseases could be eliminated?

George Church: Right. It’s 7,000 diseases. It’s about 5% of the population. It’s about a trillion dollars a year, worldwide.

It’s a throwaway line in an otherwise long interview. The interview stresses multiple times that genetic ethics are complex, and that they employ a full-time ethicist at the lab.

And yet: eliminating genetic disease through controlled breeding is the goddamned definition of eugenics.

Just sit with that a minute.

Sit with the idea that there’s a sixteen year old somewhere with Cystic Fibrosis who just found out that Trikafta is going to eliminate the vast majority of his CF symptoms. He’ll not just live to 44, he’ll probably live into his 80s. He’ll not spend months in the hospital every year, he’ll not have to do daily therapy treatments to keep his lungs healthy, he’ll likely avoid CF-related diabetes and intestinal blockages.

And in the same week, he learned that there are scientists at Harvard who would prefer that he not exist. They would prefer it so hard that they built a dating app to prevent his existence.

***

There is no question in my mind that Vertex used technology to create Trikafta. From simulating the folding of proteins to analyzing bulk data to running risk assessments to just typing up the FDA forms, nothing in the process of creating a new drug can be done without technology.

There is no question in my mind that George Church and his team at Harvard are using technology for eugenics. They would rather prevent Cystic Fibrosis than cure it. They see my husband, my friends, my life, as too expensive, a drain on society. They see disabled people as not-people, not members of the society, but as a drain on society.  They see the protection from cholera that the gene affords as not worth the value of living with it.

I feel like I’ve been kicked in the chest.

Technology saves lives; technology dehumanizes people at scale.