Life as an Extreme Sport

Latkes and a Bit of Light

December 31, 2016 Kelly ...and everything else, Bioethics

It’s been a rough week. I have been able to type that almost every day this year, and have it be accurate – more on that in another post – but nonetheless it’s true. Migraines, swollen hands, skin fitting not right, irritations to the touch, lack of sleep; it’s been the entire gauntlet of everything. So on Thursday night, pretty much the last thing I wanted to do was go to a latke party. I didn’t feel well, it was going to weather, there would be not only people but strangers. I finally ended up dragging myself out of the house, naturally compounding everything by guaranteeing we’d be late.

Not the most perfect set-up in the world for an introvert, but it was and I’d committed.

One of the weirder things about my current life is just how much time I spend around people in bioethics – either because I’ve gone to a conference or I’m judging something or I’m at a meeting or, yes, even just because I’m at a latke party. I’ve been struggling to deal with that now, for years. Who am I? How do I introduce myself? Do I share The Story? How do I explain what I know and why I know it, but also why I’m not “using it” in any way most folks would consider measurable or meaningful?

For the last few years, I’ve stuck with enigma – the sort of half smile and promise to tell the details later, over a drink, bribe me with chocolate – or taking a deep breath and dumping it all out and making sure it’s clear I don’t want to talk about it, thanks. A few people have gotten the full measured story over a conversation, but not many.

It’s weird. It’s so defining. It was almost a decade ago, but it still looms large over life. It always will, as long as I’m tangental to the field, working in or near it, married to a rising star.

For whatever reason, Thursday’s latke party was different. When it came up – who am I again, why do I know all this? I was able to address the situation conversationally, even cheekily. It ended up creating a lot of laughter, a lot of sympathy, and I think at least a small measure of respect. And it got me thinking about how we define ourselves, for ourself and for others.

I read an interview today with Mara Wilson; it was published back in April but for some reason landed in front of my eyes today. It might have been the best day, because I was already mulling similar things – how do you define yourself when it feels like everyone knows who you were, even if it’s not who you are? 1 Mara left acting for writing, and she talks a bit in this interviews (and others) about her long effort at distancing herself from acting, of asserting herself, not wanting to be associated with that image.

Well. I can relate to that.

I can also relate to this:

I’m always going to be associated with that image, and I might not want to be reduced to that image, but I’m always going to be associated with it. So I’m working on embracing it.

Ends of years are arbitrary times, picked out on calendars for reasons that don’t have a lot of meaning any more. I don’t tend to place much faith in them, or superstition, but it’s hard not to think that those words landed in front of me now, just when I needed to contemplate them in front of the blank slate of a new year.

I don’t know much, and the path isn’t terribly clear – on days when one foot in front of the other is hard physically, that doesn’t make things any easier – but I do know that I can embrace the things that define me, I can be witty and charming, I can catalogue beneficial things I learned. I can laugh. And that’s a start.

A Quick Note to Senator Markey

December 6, 2016 Kelly ...and everything else, Politics

I’m cranky. The water has been out at the house for almost 24 hours now; a water main broke just outside our apartment yesterday afternoon, and appears to be spreading through multiple city blocks, now. An historical building undergoing renovations has turned into a swimming pool, there are reports of streets buckling under the now-gushing water geysers, and my joking, yesterday, about a Hellmouth opening here suddenly seems a little more on the nose.

So I wasn’t in the best headspace to read that one of my Senators, Ed Markey, is not only supporting the 21st Century Cures Act, but is pushing for the additional “opioid crisis” addiction funding – with no thought to the harm that causes chronic pain patients, and the utterly asinine blindness to funding research into pain and other pain treatment modalities. So I jotted off a quick email, and wanted to share it here:

I am deeply disappointed that, with the 21st Century Cures Act, not only have you proudly pushed funding that supports the opioid panic (and publicized it), Senator – you are contributing to the stigma and difficulty in accessing health care patients with chronic pain face. Nowhere in any of this “omg opioid crisis” panic funding do we see what REALLY needs to happen: funding for research into chronic pain and other treatment modalities. You focus on addiction at the expense of patients in genuine pain, and you’re doing that because addiction makes a better media story than pain. While I have been surprised to learn of you – you are frequently overshadowed by Elizabeth Warren in the national media – I am now sad to say I’m disappointed in you, and beyond losing respect for your work, I question your ability to accurately and adequately represent constituents like me.

There are many other problems with the 21st Century Cures Act, which you can read about at Health Affairs (among other places, including Stat News, if you need a more local read), but in this measure, you are alienating constituents with chronic pain who, research shows, are both at low risk for addiction and are the most harmed by pushes like these. MA already has restrictive and difficult limitations to access that constrain and minimize the quality of life of disabled people. Additional funding and penalties towards abuse of illicit drugs (and conflating those with prescription drugs) harms everyone and helps no one.

I am disappointed, today, to call you my senator.

Socializing Girls Away from STEM

February 17, 2016 Kelly ...and everything else, Philosophy, Politics, Tilting at Windmills

Sometimes, I wonder if the problem with STEM and girls and their interest isn’t that we devalue STEM to girls, but that we devalue girls and their interests.

In October 2015, EDF’s Pretty Curious campaign drew a lot of ire from scientists (mostly women), both for the name and for the content of the promotional material. You see, one of the people involved was a cosmetics scientist.

I found the outrage over the name to be a bit baffling, because while I admit I really wished to be called pretty when I was a kid, I was called pretty curious all the time (and I suspect those who’ve worked with me can attest this much is still true; I’m insatiably curious about the world). I don’t hear a slur or a gendered put-down in that; instead, I actually hear the kind of language people are encouraged to use when discussing young girls: talk about their minds, not their bodies. And “pretty curious” is definitely addressing the mind!

It almost seemed like bigger outrage came around the fact that the campaign includes cosmetics scientist Florence Adepoju. Rather than focusing on diversity, as Adepoju is a woman of color, critics focused on the fact that she’s a cosmetics scientist. Because, you know. Girls and makeup and stereotypes–nevermind that you actually need science to make makeup, and that’s part of the point of including Adepoju in the first place: she used science to study how to make makeup (her dissertation was on getting lipstick to stay on lips), and built that into a successful smallbatch makeup business for women of color.

Not bad for 24, eh? Certainly the sort of women I’d like the girls in my life to look up to, anyhow.

But she does makeup, you see. And so people jump on it for being too girly, and the message that’s sent? Well, whether it’s intentional or not, it’s telling girls (and women) that it’s bad to be interested in makeup, in “girly” things.

My cousin wanted to start up summer jewelry-making classes in an income and resource-poor area of the country; she’d provide the tools and materials and teach anyone who was interested how to make jewelry–and sneak in geology lessons via gemstones. After all, to understand the quality of what you’re working with, you need to know how it’s made. She was specific in saying that anyone would be welcome, but also that she wanted to target younger girls in her community who might feel alienated from more boisterous physical sciences summer-camp-esque classes, which are largely populated by boys in her area.

I floated the idea by some scicomm people, who were horrified. Jewelry-making? It’s too stereotypical! We need girls to go into STEM! Not be girls! Another friend is getting the similar pushback over a science-y fitness class.

It’s a very weird sort of mental holding to have, isn’t it? We can’t use science to talk about things that girls are interested in, are targeted to via advertising, will likely spend lots of money on for themselves over the course of their lives, and have the potential to be skills useful for real-life, adult, science jobs.

The examples, though, seem to me to indicate not a problem with STEM, but a problem with girls. In particular, a problem with the way society can socialize girls to be “girly,” to like makeup and jewelry, to want to stay fit, to be interested in clothing design. But instead of working to open those areas up to boys while simultaneously encouraging girls, it seems like we’ve kneejerked so far away that any attempts to frame these “girly” areas as science-and-okay-for-girls is rejected.

But I have a feeling that when we do that? We’re rejecting the girls who are interested in these areas, and not the socializing behind the girls.

4:46pm, edited to add: After I posted this, Bethany pointed out that this was a discussion going on in early January that I probably missed because I was still recovering from emergency hospitalization/surgery/death-flu stuff. So here is Jamie Bernstein’s post In Defense of Pink Science, and Shannon Palus’s post that Bernstein was responding to.

American Thoughts on Australia Day & Acknowledgement of Country

January 26, 2016 Kelly ...and everything else

Yesterday/today (the 26th of January; time is a weird thing when you’re straddling the dateline) is Australia Day, also known as Invasian Day—it’s a day of celebration akin to the drunken antics of Americans on the fourth of July for European Australians, “settlers,” and a day of mourning for Aboriginal Australian and Torres Strait Islander communities who see it as a day of invasion and subsequent struggle to survive. So basically, the partying of the Fourth of July mixed in with Thanksgiving—after all, the European Australians did much the same to the Aboriginal Australians and Torres Strait Islanders as Americans did to Native Americans.

White folks, we aren’t so great at respecting other cultures.

Survival Day is becoming a common reference instead of Australia Day, but it seems like a general preference is still to separate out BBQs and beer from remembering genocide. (Click image to enlarge.)

And the thing is, it’s not like the Indigenous Australians aren’t down with celebrating Australia—they are, after all, Australians, too. It’s just they’d really like it if perhaps the party could be held on not the same day that commemorates mass slaughter and attempts at cultural eradication that still go on today.

Anyhow, you should read this article over at Buzzfeed and watch the embedded video, below. But what I wanted to talk about was something that I saw people doing online: identifying the land they woke up in. This seems to be a variation on the Acknowledgement of Country that happens at a lot of official events, and it’s one where individuals, yesterday, were acknowledging the historic people of the land they live on:

@AnitaHeiss I woke up in Philadelphia, but have lived on Wurundjeri, Ngunnawal, Eora, Butchulla, and Noongar land.

— Nicholas Evans (@neva9257) January 25, 2016

This, I thought, was neat, and a way of showing respect to people who you yourself may not have harmed, but your ancestors did harm, by virtue of their participation in the forming of the place called Australia—or America.

I thought I’d compile my own list of the Native American lands I’ve lived on in my time floating across the United States; what I didn’t imagine was that it would take me several hours to track this information down. After all, I grew up attending Ohlone events in the San Francisco Bay Area, and doesn’t everyone know that the Duwamish were the historical peoples in the Greater Seattle area?

Except that the Ohlone, formerly the Costanoans, didn’t view themselves as a single “Indian tribe” but a loose group of about 50 distinct landholding tribes or bands who shared a similar language, religion, and culture but saw themselves as distinct. They, like many other Native peoples, were squished together into readily identified tribal groups by the United States government during its long period of sucking, and trying to find out the specifics of the folks who lived in a specific area rather than the region (so I coul answer the equivalent of “Philadelphia” instead of “the mid-Atlanic”) proved…frustrating. A lot of this is because by the time anyone in America had the idea that maybe they should record this information, the people were dying or dead; many of the last speakers of languages, the last of their group, tribe, people, were dying in the late 1800s to 1920s, and American society was set on eradication of tribal groups. The disappearance of this knowledge was just fine with most.

So it is with some struggle and uncertainty that I can say I have lived on the lands of the following people:
The Muwekema Ohlone (Alson, Seunen, Luecha, and Puichon)
The Numa, Washeshu and Newe People
The Kalapuyan Peoples (Chelamela and Tualatin)
The Multnomah People
The Duwamish Tribe (Skagit-Nisqually/Lushootseed)
The Iroquois League/Haudenosaunee (Mohawk Nation)

And this morning, I woke up on Lenni Lenape (Unami dialect) land.

I don’t really have anything quippy to say here in finish. I think that the way we—Americans and Australians—handle our commemoration of events is painfully white and alienating, that we casually erase history with no thought to the pain it causes people who call that history their own. I think that it’s a shame we have to repeatedly have conversations about whether or not it’s a problem to have sportsball teams named after racist slurs, that we set up parties on days of massacres, that we celebrate the slaughter of millions with mattress sales and BBQs, and that we can’t get it around our heads to treat the other folks we live with, folks of colour, with the respect we want for ourselves every day.

Knowing the names of the tribal lands I have lived on won’t change any of that, but at least it allows me to move a bit closer to an ideal of mindfulness and respect that I think we should all strive towards.

fully autonomous, self-driving cars and disability

January 8, 2016 Kelly ...and everything else

I'd have some variation on this view every damned day, I am so not even kidding. — I’d have some variation on this view every damned day, I am so not even kidding.

Ah, driving cars. If I had a dollar for every time someone told me that I’m going to get my freedom back,2 I’d retire to Barbados and sip delightful rum drinks all the rest of my days. The most common version of this tends to include The Oatmeal’s exciting comic of the awesomeness of autonomous cars, including the heartfelt wish for his mother to be able to get around independently again. “Look Kelly, aren’t autonomous driverless cars fantastic? You’ll be normal again!”2

Oh, so many things to unpack in what is generally a well-intentioned, but ultimately irritating, statement.

First and foremost, let’s be clear about this: autonomous cars are not being developed for the disabled. Oh sure, the disabled may eventually benefit, but they’re not the target. For one thing, the pay gap between the working disabled vs able-bodied workers is huge–in some states, up to 37% less, and that gap persists regardless of education attained. The fully disabled are often among the poorest people in American society.

People who earn a lot less than average, people who are often in the lowest socioeconomic bracket, are not the people who are targetted with shiny new technological advances…like self-driving, fully autonomous cars.

But let’s wave our hands and put that aside, and say we live in a magical world where this isn’t an issue–Bill Gates and Mark Zuckerberg decide to team up to make sure every single disabled person in America has access to one of these awesome new cars.

There’s still the steering wheel.

In education, where Texas goes, textbooks go–it’s why the legal debate over what’s inside those bindings gets so much coverage. Texas is a massive market for textbooks, and it’s easier to build to that market and push the results on others than to try to do something different for other states.

California is kind of the Texas of technology, and California has said newp, fully autonomous cars must still have brakes that a driver can operate, and a steering wheel a driver can override and control. Not very easy to do if you’re blind, if your foot doesn’t work, if you can’t rotate to look over your shoulder, or all the other reasons people are no longer able to drive.

And it’s not just California that’s cautious. A brand new study by Volvo shows that 92% of folks? Believe they should be able to take over control of an autonomous car at any point.3

All of which means that anyone who wants a fully autonomous self-driving car is going to be able to afford the car and be able to drive it normally. That’s going to exclude all those disabled folks who aren’t driving because of their disability.

But those facts aren’t really the whole of it, or the worst of it. The whole, the worst, is this: people, whether they’re companies or tech evangelists, are selling a false promise. The whole “this is going to revolutionize the life of disabled people” is selling the public a bill of goods and being used to generate positive feelings about new technology; I can almost guarantee any advertising we see will be warm, fuzzy, and all about family and “regained ability.”

People who are disabled, disability itself, is being used to sell the concept of self-driving, autonomous cars to able-bodied folks, when the reality is, they’re at the last of the groups who will benefit from these technologies.

“We’ll save the disabled people” is not only irritating, it hurts.

If you want to help disabled people–people like me–have better access to the community around them, advocate for better transit, better walking and biking communities, and easier and cheaper access to paratransit.4 Don’t use my inability to drive (ironically, because of a car accident) to feed or feel better about your desire for novel technologies.

With thanks to Bethany, for understanding.

Category: …and everything else

Latkes and a Bit of Light

A Quick Note to Senator Markey

Socializing Girls Away from STEM

American Thoughts on Australia Day & Acknowledgement of Country

fully autonomous, self-driving cars and disability

Random Quote

Seek And Find. Maybe.

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