About that title...
In which I try to explain what I am up to.
I was diagnosed with Multiple Sclerosis in 2013. I was going to write that I’d been living with it since 2013, but I suspect it’s been more like since 2010, which anyone with a chronic condition will know are those lost years when doctors assume you’ve just hurt yourself or are making it up. So 14 years? And I have the primary progressive kind, which means I’m probably not like your friend or cousin or acquaintance who has MS and you’d never know it because she’s doing X, Y, or Z. I don’t get a remit, so you definitely notice that I’ve gotten steadily more disabled in that time. I now use a walker (well, a Rollator, which is a walker with wheels) and I just got myself a wheelchair (hybrid manual and electric, because I am sloooowww manually but want to develop great arms). I got the chair because I’ve decided to accompany my spouse on his travels around Europe, Australia, and (probably, maybe in the next year) Antarctica. Because why not?
But lest I sound very brave and cavalier and foolhardy, I hasten to say that this will be one of my first travel jaunts while in a body this disabled, and definitely while using a wheelchair. And so I have been doing an extraordinary amount of reading (most usefully the incredible blog/newsletter Wheelchair Travel—whose founder, John Morris, makes it seem like travel is not only possible but fun in a wheelchair—and the very helpful Wheel the World). Which has made me almost confident in my fast-approaching travel.
Being a professional writer and editor, my instinct is to write all of this down. That, and I’ve been getting nudges from friends and family that they want pictures and updates and stories, which I will not send individually but might put here. So I am starting this blog with no promises of regularity or punctuality of even that I’ll keep at it. Because if navigating this space (both mental and geographical) has taught me anything, it is that I really can’t trust that I’ll be able to stick to a schedule or a timeline. Or that I will want to.
But today, I want to. We leave tomorrow for Dublin, the first stop of four on this first trip of four in the coming year. Dublin, then Bordeaux, then San Sebastien and Bilbao. Which leads me, finally, to a quick note about the name I’ve chosen for this travelogue/blog/journal/whatever: “Wheelchair, Bound."
It’s a central tenet of disability activism that terms like “wheelchair-bound” are anathema. And rightly so; the idea that one is bound to a wheelchair is a distinctly ableist conceit, that a body that does not need a wheelchair (or any assistive device) is normal and bodies like mine are lesser for their dependence on a device, which the able-bodied sees as limiting or binding. But for those of us who use them, wheelchairs (and walkers, canes, and other devices) are actually enabling machines that defy the ableist assumptions of the majority of the world by making it possible for us to travel through it and engage with it.
For me, world travel would be unthinkable without my chair. It makes possible another definition of “bound” (not unlike how my disability is redefining so many of the ways I exist in the world). Because of my wheelchair I am outwardly bound, bound for adventure, bound to discover something new (even if it’s just a pub), even, at my most poetic moments, bounding toward a future of exploration of novelty. And the editor in me likes that it comes down to punctuation: I’m getting rid of that pesky, dehumanizing, immobilizing hyphen, and replacing it with a comma, which suggests clauses and possibilities and lists! I’m not sure I could ever be wheelchair-bound, but I’m pretty excited about using my wheelchair, bound.