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disability – Life as an Extreme Sport
Life as an Extreme Sport

Once More, Across the Pond

[Written 2pm CEST Wednesday June 25.]

We are comfortably in our hotel room in Prague. Uneventful flight; I either have the best noise-canceling headphones ever, or the FOUR kids under eight that were sitting directly across from us were really angels in disguise.

We landed around 9:30am local time (3:30am ET), which meant I was still wide awake––insomnia training is good for something! There was a ride waiting for us, and our original hotel… sigh. It was beautiful; old, elegant, owned by the Czech Academy of Science, which is connected to it by a garden.

It also didn’t have an elevator or en suite bathrooms (they were as far from the bedroom as you could get without going downstairs, in that they were NEXT to the stairs and we weren’t), and the path between the bedroom and bathroom was full of multiple level shifts in the floor and wasn’t lit at night. ?

On top of those concerns, there’s a heatwave in Prague right now, and while I wasn’t expecting A/C in an old building, I did at least think there would be fans.

There were no fans. Instead, windows were just open. Which might be okay if you could get a cross-breeze between windows, but there was only one window in our room… and while it was rose- and jasmine-scented when the breeze was blowing when it wasn’t? The smell of recycling and trash, from the trash pile right below our window.

Did I mention ??

So Nick called the organizer he’s been working with, just to see if they had recommendations of where we could stay. While the room was paid for by the conference, we obviously had no expectation of them doing anything, since this was an “our bad” situation–Nick had forgotten to mention accessibility needs, and normally we can make things work, but the health-threatening heat wave kinda creates inflexibility.

Instead, David showed up, asked Nick careful questions about my needs, and his assistant promptly booked us into a hotel across the river, in what appears to be a vibrant part of the city–and then he drove us there!

Our new hotel has also been awesome; the assistant made sure there was an accessible room, and apparently also relayed my needs, so before we arrived the front desk staff massively chilled the room so it would be comfortable for me, and placed a shower seat in the bathroom, “just in case.” They’ve also asked if there’s anything else they can do to help improve accessibility for me, just let them know.

I am just so impressed. I can’t think of the last time I had to do the “oh so hey, broken body here with specific needs” and… had them met. Had them OVER-met. With no fuss or anger or blame or anything other than apologetic “so sorry to put you through this.” It’s so…novel and strange. And I just feel so…welcome!

Jazz Hands vs Clapping – One is Not the Other

Oh for the love of – there’s a news story going around saying that the University of Manchester Student Union “banned” clapping, because it’d disruptive for speakers and can cause issues for students with sensory issues, and told students to instead use “jazz hands” to convey applause, like sign language!



So in other words, the University of Manchester Student Union asked students to applaud, and folks who’ve never chatted with a deaf person or been exposed to a signed language assume jazz hands is just the same as sign language, because it…involves hands?

Ah yes. Because they are so similar. (They are not similar at all.)

I mean, if you want to talk about language constructing the world and Othering, here you go; you couldn’t ask for a better example. Because at best, the media coverage of this SHOULD read “clapping out, clapping in at university – student union encourages silent applause” or somesuch to be accurate, but they went for the evocative and absolutely incorrect, Busby Berkeley frill of “jazz hands” instead. So think about it: what does BBC or ITV or anyone else GAIN from characterizing a move towards a silent applause as “jazz hands” rather than “signed applause” or “silent clapping”? It’s about how we construct worlds – and exclude people. Jazz hands and spirit fingers are punchlines, often literally. So what does that say about the writers’ view of signed languages? (Here’s a hint: nothing good.)

Ableism isn’t always about access, it’s also about environment. Using someone’s native (signed) language as a punchline, delivered while simultaneously deriding the needs of students who can experience sensory overload and the thoughtfulness of students thinking about how to make their spaces more inclusive of multiple needs and languages, is a pretty special level of “hey, you’re being a jackass.”

fully autonomous, self-driving cars and disability

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,1 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.

Comic by xkcd/Randall Munroe.
Comic by xkcd/Randall Munroe.
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.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

The Invisible Made Visible

While I have never been terribly quiet in discussing my disability, I also acknowledge that I am, for a disabled person, in a privileged class. I can “pass” as normal – that is, I don’t look outwardly disabled. There are a host of issues that come with this, including a lack of “validity” from both normals and disabled folks. (I don’t look “sick”, so how can I be “sick”? Comes from both sides of the aisle.) But, problems aside, I fully acknowledge that it is nice to go out in public and not have the public gaze focused on me. Been there, done that, definitely didn’t like it.

Which is what makes this so strange
The invisible made visible. on Twitpic

I haven’t been visibly identified as disabled in a long time. When I fly, for various reasons, I normally fly United, and I pay for the upgrade that allows me extra leg room and space. This comfortably addresses my issues, and there’s nothing else I really need to do, other than make sure I select smart seating when I am booking my flight.

For various reasons, I am flying Southwest today. I haven’t flown Southwest since I was a child, so I had no idea what to “do”. I tried to contact Southwest air via their Twitter account, and they promptly ignored me. Their customer service agents, over the phone, told me there was nothing they could do – just try to sign in early enough to get priority boarding. Sigh. So I read over the information on the website, and they said to contact customer service at the airport – so I did. I explained that I am disabled and that I do need advanced boarding and he asked for a doctor’s note.

Oh, from the doctor I haven’t had since August. Sure, I’ll get right on that thing that wasn’t mentioned on the website.

I volunteered to show Adam, the customer service rep, the pain patches covering my right arm. He laughed, said that wouldn’t be necessary, and explained my boarding process, handing over the above blue tag.

Now I am sitting here, and irrationally, I feel branded. Like everyone is staring at me – which of course isn’t true, unless you count the adorable moppet who appears to find me the most fascinating thing ever. Still, next to me is this bright blue boarding pass, clearly printed PREBOARD – and why.

Is the person across from me looking over his newspaper to look at me? Figure out what is wrong with me? Wonder why I have armwarmers on, which cover most of the pain patches and hide them from visibility? (Practically speaking, they keep them on, but is that what it looks like?)

Is the woman with the three young children trying to figure out why I get to board ahead of her?

Is that a scowl from the very well-dressed man the fact I might get the seat he wants?

Maybe more importantly, why do I care? Why does it feel so exposed and vulnerable to have people know I get to board a whopping few minutes ahead of them? These are people I don’t know and will never know; we will be spending at most three hours together on a packed flight.

And yet, and yet. I sit here and wonder: should I exaggerate my limp? Avoid full mobile range of my right arm, to emphasize that I am indeed broken, and not just gaming the system? Should I put on airs and affected manners just to verify I am legit, really and honestly? And ultimately, if the gate agents don’t care, why should I?