Travelling with a wheelchair


Image description: Unoccupied black, lightweight manual wheelchair with power-assist wheels, tubular armrests, and a crutch holster at the back, parked on a hardwood floor in front of an art deco-style glass pocket door.

Until recently I have used crutches outside the house, whether in or out of town, but it’s been getting harder and harder to get around. For my last Guest of Honour gig the convention committee rented me a power chair. It made moving from one event or venue to another very much easier but power chairs are so big that they create distance between the user and other people; it’s difficult to be part of a group. Also, the lack of effort made it clear that prolonged use might tempt me to abandon exercise altogether.

So when it came time to get my own wheelchair, I opted for a manual chair with power assist: the wheelchair version of an electric bike. I chose a rigid frame TiLite Aero Z with E-motion M15 power-assist. The armrests are lightweight and removable; there’s a holster on the back to carry my crutches. It’s ultra lightweight, except for the lithium-ion batteries that power each wheel. (I have a set of unpowered wheels for emergencies, for example if a huge earthquake hits and I can’t recharge for a couple of weeks.) Those batteries mean each wheel weighs about 25 lbs, more than twice as much as the rest of the chair. It’s small—it’s made-to-measure so the seat is only 15″ wide—but it’s too tall to stow upright in the back of the car. So when we travel locally we have to take off the wheels and load the components separately. And I do mean we; this is not something I can do on my own. Apart from lacking the leg strength to lift anything, I can’t currently drive. I’m gradually relearning, with hand controls (and, oh, that tale deserves its own post), and when I have my licence I plan to take out one of the passenger seats on our car and replace it with a lift to hoist the undisassembled chair inside. Then I’ll be independently mobile for the first time in at least 10 years. I’ve almost forgotten what that’s like…

Getting used to the chair is a process. We made our first out-of-town trip with the wheelchair just a couple of weeks ago when we went to Orcas Island for a few days’ break. We drove an hour north to Anacortes and took the ferry across to the San Juans.

The Washington State ferry system is an intricate and beautifully oiled mechanism. Watching the crew work out how to load all those cars, trucks, people, goods bicycles, freight, motorcycles and other assorted items so that each can get off at its intended destination is like watching a Rubik’s Cube savant in action. It’s fascinating. (One day I suspect Kelley or I will write about it for page or screen.) With the wheelchair, what we needed on the ferry was to park close to the passenger elevator but with room at the rear of the car to get out the chair components, and room at the side to assemble them—all out of others’ path so we don’t gum up the works. The ferry workers accommodated us perfectly; clearly they’ve done it a million times before. I did find myself wondering, though, whether they could accommodate four or more wheelchairs at once. Given our ageing population, I imagine I’ll find out sooner rather than later.

So, for now at least, the ferry works. Next test: flying to and getting around in San Diego.

The central difficulty here is those li-ion batteries. It’s illegal to put batteries that size in the unpressurised hold; they’re liable to explode into flame. So I have to take the batteries with me into the cabin, but that disables the power-assist. And I can’t use the chair on those steep jet bridge, especially with a carry-on bag, without the power assist. So I have to wheel down the jet bridge to the door of the plane, remove batteries, safe them (fit silicon caps to the contacts), and safe the interior hub contacts (with a plastic disc to cover exposed contacts), give the chair to airline loaders to put in the hold, get my crutches, stand up, remove the arm rests and tape them together (it’s hard to stand up without them), and somehow get on the plane carrying everything. All while other passengers loaded down with babies and buggies and diaper bags are piling up behind waiting to get on. And then do it all again in reverse when we landed.

We were not going to be in San Diego long; parking for less than 48 hours would work out cheaper than shuttles from our house to the airport. So we drove ourselves to SeaTac. Getting about in the airport in my own chair was easy and so very much more congenial than being wheeled about in an ill-fitting uncomfortable chair by a porter who treats me like a sack of potatoes.

We flew on Alaska. We explained at every step of the way (on the phone at booking, at check-in, and at the gate, and to the cabin attendants before disembarking), on each flight, that we would need at least five minutes lead time at the end of the jet bridge, right by the plane, in order to not hold up boarding. Alaska did their best, and everyone was very friendly and pleasant, but they couldn’t seem to quite grasp what we needed. In the end, on both outbound and inbound legs, we felt intense pressure to perform fast. We fumbled a bit in Seattle on the way out (hey, it was our first time), were a bit quicker when we landed in San Diego, maintained our composure when embarking on the return flight, and had became quick and efficient by the time we disembarked in Seattle. On both flights I fretted a bit: I’d heard so many horror stories of the damage wreaked on chairs in the hold. But each time the chair was just fine.

In San Diego we took a wheelchair-accessible Super Shuttle to and from the airport and hotel. This worked out very well and I can recommend them.

We stayed at the Westin in the Gaslamp Quarter: every inch we visited was accessible. It was like living in a dream of utopia; there were no barriers at all. If all the world were like that I think many disabled people would live longer, happier, richer (in every sense of the word) lives.

So, travelling with a wheelchair on the West Coast, visiting the rich touristy areas of an affluent liberal city, was unexpectedly good. I’ve no idea how people do it when travelling on their own—though I expect to find out that, too, one day—but given a choice I will use my own wheelchair from now on.

However, I am not so sanguine about our upcoming travel to the UK. For one thing, the sheer distances involved at Heathrow gives me pause. I think it’s miles, for example, between British Airways’ lounge and the gate they use for Seattle. For another, I’ll fret for nine hours about the death and destruction of my chair on the trip out. But I have to take my chair so I’ll fret whether or not we load the chair at check-in or at the plane. Once in the UK, intra-city transit will be easy: all big cities have many wheelchair cabs. The big problem, though, will be intercity travel. I don’t care what any rail employee tells me: British trains and train stations are not reliably accessible. Toilets don’t work, elevators don’t work, you have to get porters to find and deploy ramps; the whole system is a mess. Most car services that will drive you from, say, Heathrow to Leeds can’t accommodate a wheelchair unless it folds. And wheelchair accessible intercity transport is wickedly, iniquitously expensive. So I think we’ll be trying to find a service with an SUV/people mover big enough for disassembled chair plus suitcases as luggage. It will be pricey. But that’s my lesson: it costs much more to be a cripple than a healthy traveller.

Lessons for next time? Get the wheelchair insured! The damn thing cost more than our car. We’ll be screwed if it gets broken, but at least if we’re insured we can rent something while we figure it all out. Also, we need some kind of custom bag to organise all the stuff we need for the safeing and then to hold the batteries and arm rests securely on the plane. And rather than a carry-on it would be easier to have a detachable bag or pannier for the chair, preferably something that fits underneath the seat. If anyone has suggestions, I’m listening…

OtherLife debuts San Diego on Thursday!

Lifted wholesale from Kelley’s blog – with permission, which I get because, hey, we’re married…

I am counting down to the North American premiere of OtherLife in San Diego on Thursday Oct 5 at 8:00 PM. The chance to see the film on a big screen with an audience is a huge payoff for me – something I’ve dreamed about for a long time.

Last night at my house:
Me: I hope lots of people come to the screening.
Nicola: They will.
Me: What if they don’t?
Nicola: Then we’ll have a lot of room.
Me: *whimpers*

As much as I like my space, I earnestly hope that Thursday’s screening will be stuffed with audience. If you’re there, please make sure to say hello. I will be the one wearing the WTF Is Happening Right Now look. I’ll be pretty easy to find.

It will be a party! Join us!

Back from a break

Kelley and I have just got back from a few days on Orcas Island with a friend. Above was the view from the house we rented: late afternoon when we first arrived, and late morning on one of the many perfect days following. The others wrote a lot; I just stared at the water, read, and thought. Sometimes the three of us would go to Moran State Park (home of Mountain Lake: nurse logs and fishing herons), or to Darvill’s, the lovely little bookshop and café in East Sound. Kelley and I made our own expedition to Olga. (If ever you’re at Catkin Café, I can recommend both the skirt steak with salad—both steak and salad leaves were pretty much the Platonic ideal of their kind—and the potato and leek soup. The walnut and carrot bread is also pretty damn good; and, now that I think about it, the English Breakfast tea—piping hot water and proper tea leaf!)

I took binoculars and watched seals and heron and deer. (Black-tail deer were everywhere; too many, really. The island needs a couple of lynx or some other top predator.) But mainly I just zoned out and ate a lot. Actually we all ate a lot: we all love food, and cooking, and wine. We stayed up late by the fire, talking of writing, love, and life.

But mainly I did nothing. It’s the first time I’ve done nothing for a quite a while. I needed it. I don’t think I’d realised just how depleted I am after beginning and completing a PhD, and writing and editing a new and unexpected book, in a single year. But this trip helped me understand just how thorough the depletion is. So I’m going to be careful with my resources for the next few months. Expect me to start saying no to a lot of things…


Punching Nazis

There’s been a lot of conversation about whether or not it’s acceptable to punch a Nazi. That, dear reader, is a matter for your conscience. However, if you find yourself about to punch a Very Bad Person, it might be a good idea to know how.

A long time ago in a galaxy far, far away I used to teach women how. So here are half a dozen pointers:

  • Don’t hit bone on bone. If you absolutely must, make sure you use your strong bone (your elbow) on their weak bone (their nose) rather than, say, a fist to the point of the jaw. But it’s even better to use bone against soft tissue. An elbow to the neck, a fist to the kidney, a sword finger to the solar plexus, a forearm between the legs, a heel to the side of the knee. It’s good to go for something disabling so they can’t chase you afterwards. Knees and throats are very useful for this: if they can’t breathe they can’t run; they can’t run if their patella’s gone, either (unless they have a wheelchair handy—and perhaps I’ve just lived a sheltered life but outside a Stephen King story I’ve never met a Nazi in a wheelchair).
  • Get close. You have to be a lot closer than you think. If you’re hitting someone you have to be right inside their space. Maybe even touching if they’re tall and you’re not. Try it with a cushion; if you’re not used to hitting things you’ll be surprised.
  • Hit on the out-breath. Preferably with a shout. Sound will make you feel better and them feel worse.
  • Hit fast. Power comes from speed and mass. So you could wrap your fingers around a roll of quarters, or you could hit faster. In a perfect world, you’d do both: whip that fist/elbow/knife-hand through space. (It’s very satisfying.)
  • Hit through the target. Imagine you’re swinging a baseball bat—right through the ball. If you’re going for that full-arm swing from below, imagine your target wearing their balls for earrings…
  • Hit more than once. One blow is rarely enough. I’d say three minimum, depending on the damage you want to inflict and how fast you want to get out of there. But my favourite strike is a one-two combo, so mileage varies.

There are all kinds of other things to remember—put your thumb on the outside of your closed first; if you use a weapon make sure it’s an ordinary object (a comb, a book, a key); and always have an escape route—but those six are enough to get you started.

Workshop waitlist

The one-day workshop I’m teaching for Clarion West on Sunday, 8 October, is full, but it’s still possible to add a couple of names to the waiting list. Given that there’s almost always a cancellation or two due to the vagaries of life, the first couple of people on that list stand a very good chance of getting in. Apply here for the waiting list.*

The workshop is called What Readers Like—And Why:

Why do readers respond more strongly to some fiction than others? How does a writer immerse a reader into the protagonist’s world and persuade them to feel as the protagonist feels, see what she sees? Using examples, you’ll discuss the neuroscience behind what makes a particular word, sentence, or paragraph more likely to evoke empathy in a reader. Then with writing exercises and discussion you’ll learn how to analyze fiction—yours and others’—to discover how to make it more powerful. Prepare for this workshop with assigned reading and viewing, and come ready to learn how to make your readers’ hearts beat faster.

Only a bit of the workshop will be neuroscience; there’ll be a lot of stuff about genre and reader expectations, about awe and joy and reversals, about the sense of recognition. Also many other things I haven’t figured out yet. Most of it will be learning what makes great fiction gripping, and how to check your own work to make sure you’re enticing your reader rather than repulsing them. So it’s not just about what makes great story but also what makes a reader think, Ugh! and throw the book at the wall. We’re all different, though, so I’m expecting some of the discussion to be, y’know, lively…

One more thing. Until Clarion West commits to a timetable for accessible summer workshops, this will be the last thing I teach for them. This may or may not have any bearing on whether or not you apply.

* There’s still space in two other workshops, taught by J.M. Sidorova and Kij Johnson.

Disability Literature Consortium

The Disability Literature Consortium (DLC) is a group of disability journals—Breath & Shadow, Kaleidoscope, Deaf Poets Society, Pentimento, and Wordgathering—who have come together to provide a booth at the annual Association of Writers & Writing Programs (AWP) Conference to showcase the work of disabled writers. They plan to staff a booth at AWP 2018 in Tampa where they will display not only their own journals but books from other publishers.

In order to fund that booth, the DLC are raising funds on Generosity (the non-profit part of Indiegogo). I’ve already contributed. I hope you will, too.

If you want to know more about the missions of the journals that make up the DLC, take a look at the Storify of #CripLit’s Editor Roundtable held in January this year. Then go give some money!

More thoughts on women warriors

Here’s an interesting addition to the debate about the Viking warrior grave in Birka I discussed yesterday on Gemæcce. The author, Professor Judith Jesch, makes some good points about the overall gaps in the journal authors’ argument and presentation. Go read it. She is not wrong about many of them. I agree, from the supporting evidence offered (or lack of it), that there is no way to know for sure that the bones tested are the bones originally pictured. However, the evidence on balance suggests, in my opinion, that they are. I wish I were an anatomist; I wish I could assume that the original illustration is accurate. Perhaps then I could make a guess about the likely biological sex of skeleton pictured.

Of course I can make a guess—that, yes, it’s female—but I have no confidence in that guess. I’m an amateur. I can stare at pictures of brow ridges and mastoid processes until I’m blue in the face; I’m still just guessing. And Jesch is not wrong, either, when she suggests:

I have always thought (and to some extent still do) that the fascination with women warriors, both in popular culture and in academic discourse, is heavily, probably too heavily, influenced by 20th- and 21st-century desires.

I’m quite willing to admit that my perspective on the issue of women warriors in a heroic society is coloured by desire: I want it to be possible.

However, if the bones are in fact the ones pictured in the grave, and if at some point in the future more attention is paid to sword-grip circumference and bone development (were the hands large enough to grip the sword? were the wrists sufficiently developed to wield it?) and the consensus is that, yes, biologically it was possible for the individual to have fought with edged weapons, then either we say: It was a woman warrior, or we say: We should go back and delete all attributions to warrior status based on grave goods. Because we either follow one standard/set of assumptions or we discard them.

There’s a lot more to be said on this one, I think. I’ll look forward to hearing how the conversation develops.