After a really lovely vacation sailing around the coasts of Tuscany, Corsica, and Sardinia (thanks to the generosity of some extraordinary Russian friends; more on this adventure to follow in subsequent posts.) I find myself back in Moscow, facing a professional dilemma. To go to one of the world’s most important exhibitions of contemporary art, Documenta 13, or to stay here in the Motherland with my newspapers and books and archives? The dilemma at hand is a dilemma largely because of disability issues.
Here’s what I know about Documenta: I’ve been once before (The event is held every five years in the post-industrial city of Kassel, Germany.) There is an awful lot to see. Some of it is interesting. Some of it is not. You may get a few good ideas out of the experience, which you can then relate back to your own work. If you do, then the trip is worth it. For sure. And just based on the amount of stuff being acted out and on display, chances are pretty good that you will come away with something. So that’s one check mark in favor of going. But taking in all the art that is on offer at Documenta’s various venus can be a staggering task, even for the able-bodied among us. Events are held that several different venues around the city. There is a lot of walking and maneuvering, and more than a few rides on public transportation. There may or may not be a convenient places to stop and rest for thirty minutes at a time along the way. This could be a problem. A really big problem.
I do love the Evil Aid. And I use it all the time. And honestly, honestly I confess to actually and foolishly and certainly secretly believing that the addition of the Evil Aid to my life would somehow magically solve all my EDS-related problems. I was pretty sure of the following:
A: I’d be able to remain standing on my feet for a long as I wanted every single day.
B: With the use of the Aid, all my pain and stability issues would dissipate instantly, like vapor.
C: All questions relating to the possible occasional need for more help could be laid to rest, at least for now.
Um, reality check? Let’s start with B. It is true that the employment of the Aid has decreased my pain and discomfort by a staggering 85%. It has also helped rehabilitate the muscles that my old limping, improper gate had allowed to atrophy. This means that even when I’m not using it, for example at home or over short distances, my posture has improved, as has my general stability. Also, since the seemingly simple act of walking is no longer seriously over-exerting my muscles and joints, my EDS fatigue has decreased somewhat. My overall ability to function has improved, as has my productivity at work. Or to put it another way: Aided-mobility—–>empowerment. Win win win win win. BUT. It has not effectuated a miracle. I must say this out loud, because the general feeling of improved strength and stability can fool me into thinking it has, to the point where I allow myself to stand or walk unaided for way too long and then suffer the less than pleasant consequences, which I have discovered, can last for days. So there is that. But also…there are still a few troublesome scenarios, for which I have found the Evil Aid only provides minimal relief. One such scenario is the Museum Scenario.
I am a philosopher of the visual. It is part of my job to go to museums and to look at objects from visual culture. Museum/exhibit/gallery going requires not only a lot of walking/moving. It also requires a lot of standing. And it is the standing that is the killer. I cannot stand for long periods of time. The ‘cannot’ aspect of that sentence is definitive. If I am required to move and stand, move and stand, move and stand, then I must sit and sit frequently. If I do not then the pain and weakness become so intolerable that I have to go home and lie flat. And trust me, once you’ve left a museum or show for the tenth time, because of this you really start to think “Wow. This totally sucks. There has got to be a better way.” To be sure the Evil Aid helps. If I had to estimate, I’d say that on a good day it buys me another tolerable hour on my feet. On a bad day, it buys about twenty minutes. Supportive shoes also help, as does an ankle brace if my tendonitis is flaring up. But Supportive shoes and an occasional brace, like the Evil Aid, are helpful ingredients, they are NOT a definitive solution. The standing in place problem is a tricky one to solve, especially when faced with an exhibition space that offers its viewers no place to sit and rest for a bit. This, by the way, is specially a problem in Russian museums; for whatever reason there seems to be a dearth of benches or other similar surfaces in Russian viewing galleries. I’m not sure why this is the case. Perhaps it has something to do with the firmly held (Don’t try to challenge it with any form of logic or science, you will just get a lecture. Or several lectures.) belief that sitting on a hard, cold surface will freeze one’s reproductive organs and make one sterile for life. Or in a best case scenario cause a stomachache or a cold. (No. I’m not kidding. I wish I were, because being scolded for this is funny the first couple of times it happens, but after that, it just becomes old. And increasingly annoying.) But alas, I digress.
In my experience, there are few places to sit and rest while viewing at Documenta. In fact, there are not all that many places to simply sit and rest at all. So if I do go, even with the Evil Aid in tow, I will likely only be able to tolerate the looking and moving for short periods of time. I will definitely have to carefully prioritize what I want to see, which takes a lot of the fun and creativity out of the experience. And I may not be able to see everything I want, unless of course…I can find another solution…
If I were home in the States, I’d phone the physio I trust and see what he recommends. Although, I’m pretty sure I already know when he would say, because he has said it before to me indirectly and to my mother (who also had EDS) directly, “You know, there is nothing wrong with relying on wheels for extreme situations (e.g. all day standing)…” If that were the case, I’d go from there, and find a way to get on with it. But here I am, stuck in the Motherland, where my mobility aid options are limited to the Evil Aid. Honestly, if rollators were more fashionable and less clunky I’d just try to rent or buy a crap one just to use solely Documenta, as I think the rollator would be the perfect solution (good stability AND a place to sit). But unless I can pick up a rollator near the exhibition, this solution will quickly lose its already limited viability, as rollators are notoriously difficult to transport, especially when one does not have access to a car and is already employing one mobility aid. The other option, which would seem (emphasis on the seem) more feasible, would be to rent or borrow a set of manual wheels at the exhibition. But the Documenta (13) website is very disappointing in that it offers very little information on accessibility, so I have no idea as to whether or not this is even possible. There is only one small brief mention on the accessibility of venues for wheelchair users and other aided mobilizers, and this appears in the PDF version of a map of the exhibition, and one has to really dig around the website and know a little German to find even that.
Alternative ideas anyone? All thoughts are welcome and will be considered.