D.I.Y. Travel Crutch. Or the Joys of Modern Duct Tape.

As I have mentioned before on this blog, I have some difficulty standing on my feet for long periods of time.  This makes activities like visiting museums difficult, even with the help of the Evil Aid.  This is a problem, because my job requires me to visit art museums and exhibits, where I have to stand on my feet for significant periods of time.  My bum leg and wonky EDS joints have been making this quite difficult lately, to the point where I either hadn’t been able to finish looking at the displays or couldn’t pay them proper attention, simply because I was in too much pain.  So I decided things had to change.  With the arrival of my new Ossenberg crutches, which came in a pair, I was inspired to take on the museums with two sticks rather than one.  I figured it was the most readily available out, and if it didn’t work, I’m know it was time to move on to the next set of options (i.e. rollator, a set of wheels).  But here was the thing: I was just about to travel to Amsterdam and Budapest, mostly for work, but a little for pleasure.  I knew that I would be going to a lot of exhibits in both cities, and I was a bit perplexed about how to pack a second crutch.  I should say straight away that I was disinclined to simply purchase a long duffle bag, stuff my crutch into it, and check it in as luggage. Forearm crutches are awkwardly sized and shaped, and as such pose a safe packing challenge. I had nightmare images of the airlines tossing my stick around and bending it or shattering its cuff.  I also looked into the possibility of purchasing a folding forearm crutch.  This seemed ideal, but the best folding crutches out there (which are held together with a bungee cord like folding canes and collapse into thirds) are currently outside the bounds of my mobility gadget budget.  So I had to come up with something else, and quickly.  And you know, it may be cliche, but it does seem to be true that sometimes the best and most functional ideas come from the most unexpected sources.  A few weeks ago, at her mother’s suggestion, I bought the five year old daughter of a good friend a duct tape jewelry kit.  Recently it seems someone had the brilliant idea to add color and interesting patterns to the sturdy but easy to tear sticky stuff.  Gone are the days, dear reader, of silver metallic duct tape that you purchase specifically, because you think it will blend in well with your plumbing.  No. Now the stuff looks like this:

Options

 

My idea was simple. If I couldn’t afford a folding crutch, I would simply fasten my second Ossenberg to the handle of my rolling carry-on carry with some fancy duct tape.  I would affix extra pieces of tape to the back of the suitcase just in case after removing the crutch to get through security or to put my things in the overhead, the first strip would refuse to re-stick.  Admittedly, the sticking and unsticking was a bit clunky.  But it was cheap, and moreover, highly effective.  No extra checked bags. Both crutches on board, as airlines cannot count mobility aids as part of your carry-on allowance.  Here is a little slide show of exactly how it worked:

1.) Choose your Weapon

1.) Choose your Weapon

2.) Affix to suitcase.

2.) Affix to suitcase.

3.) Go!

3.) Go!

4.) Unstick and stow.

4.) Unstick and stow.

This method worked through the infamous security lines at Infamous International Hub here in the Midwestern Megapolis. On SwissAir through Zurich. Through Schipol in Amsterdam and again in Budapest.  And the results of the two stick museum experiment? By and large, success!  Or at least, MAJOR improvement. It seems that for me, anything that involves a lot of standing will be a two stick experience from now on. I have no regrets. But I may buy stock in duct tape.

 

 

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“Memories Come Rushing Up to Meet Me Now”

It is hard for me to believe that my little blog has been chugging along for an entire year.  It really does seem to me that only yesterday I was setting at my friends’ kitchen table on a cold wintery night in the Mid-Western Megapolis carefully following Katja’s technical instructions about how to start a WordPress blog.  I was anxious, and even a little depressed about my new life with Aid, but I was also fiercely determined to not only make that life work but to make it better. I still am. And this is why I have decided to continue to maintain this space. Much as changed for me, however, in the past year. I survived an insane and exhilarating year in the Motherland. I conducted productive original research from early Soviet primary sources on aesthetics, politics, and culture. I began to make some headway on my next big project: turning the results of all that research into a well-written publishable text. I learned a lot about what I can handle and how to cope. 

I would say that for me 2012 was eye-opening and intense. I can’t really complain about it, and I am grateful for what I got. I cannot really complain, but I can keep talking. And I will.

That being said, I want to change a few things about this blog. Until now, it has been a rant space/travelogue. I want to preserve these aspects of this space, but I also want to expand them to add more activism, more art, a little more resistance, a lot more discussion, and some D.IY. just for fun.

For those of you who read this: thank you. And please stay tuned.

Working Weekend in Stockholm: Isolation and Aided Mobility

Recently returned to the Motherland from a long weekend away in a couple of Nordic countries. I spent much of my time there preparing for a conference presentation, giving a conference presentation, hearing some really excellent and exciting presentations, and then madly finishing a grant application with tedious stipulations. In short: work, work, work. I have essentially two photographs of Stockholm.  One of the old city:

And then this one, which was my view for two days from inside the conference:

(PS-Thank god for Swedish coffee.)

I must say this for Sweden and Finland: both countries are really pretty accessible for both folks with walking aids and wheelchair users.  It was such a nice treat to visit two countries that actually do care about the quality of the lives their citizens lead. You have not only a right to access, but also reasonably comfortable access. Imagine! Wish I could say the same for my own home country, but again, I digress.

Anyway, I wanted to focus on something particular to the Aided Mobility experience that made the whole work-conference thing slightly more stressful than I ever experienced it in my unaided academic past: unintentional social isolation.

Here’s the thing: A Swedish building might be accessible, with smooth floors and ultra-modern lifts. This however, does not mean that the seating in a particular auditorium or lecture hall will be all that accessible.  If in my unaided life crawling over seats and spectators to reach a spot in the middle of a row was a precarious operation at best, it is now, with the Evil Aid, utterly impossible.  I can’t crawl over anything without tripping, falling, and becoming the spectacle.  Also, there is the ever present issue of “Where the heck to do you put the Evil Aid?”  Best I can tell, it is always in the way. There is never any good place to stash it. You lean it, it falls. You lean it, it blocks someone’s view.  You lean it at an angle, it trips someone. You put it flat on the floor, it gets dirty (or really dirty depending on the floor). I found myself, during the course of this conference confining myself to end-row seats at the very front of the auditorium, since I could A.) Access this area without negotiating stairs B.) Not have to crawl over anyone C.) Usually find a reasonably out of the way place to stash the aid.  That was all well and good, but you know what?  It turns out that end-row seats at the very front of an auditorium are pretty unpopular, and for good reason. It is harder to get a good, wide angle view of what’s being shown, and as a result no one wants to sit there. So this means that you, the Aided Mobilizer, end up sitting alone. For two days, during a conference that like all conferences was at least in part organized for the sake of networking.  There is no other way to describe it expect to say that it is a major bummer.  I won’t go into too much detail about the other actual networking opportunities such as our cafeteria lunches and dinners, expect to say that it turns out dishes and trays in Swedish cafeterias are heavier and of a much higher quality than there Russian counterparts, which is a BAD thing for the Aided Mobilizer. You know, I have just about figured out exactly which dishes I can safely carry with one hand here in my Russian university’s stolovaya, but in the Swedish version, I was totally thrown off and either hungary or annoying, because I had to keep going back to the buffet line for something else, and due to a mostly inaccessible seating arrangement in the cafeteria, had to either crawl over people and/or pick my way precariously around the lunchroom while balancing something in one hand to do so.  Also, again in the cafeteria and at our end of conference dinner the only accessible places to sit where at the ends of tables that were somewhat isolated from the majority of the conference crowd.  As my friend D., who recently finished conducting his research in Nantes says, “Le sigh.”  Here’s something though that non-Aided Mobilizer academics might find useful: If you see someone with an aid or in a wheelchair sitting alone at a conference, just know that there is a very good chance that she isn’t sitting alone because she wants privacy or personal space.  She’s probably sitting alone because the isolated spot is her only accessible option. Go and sit next to her. Talk to her. Share our research. Both of you will benefit. That is after all what conferences are for: exchange and network building, for all.

Corn and Sky. Part 1: Kyiv.

I once read that the blue and yellow of the Ukrainian flag are meant to represent endless fertile fields of corn or wheat stretching out to meet the clear blue horizon.  I have no idea if this is true, but I do think that it makes an excellent story.

I had the pleasure of traveling to Ukraine last week.  I really do adore Ukraine. The countryside is as beautiful as the flag story implies: boundless green and yellow fields where everything grows.  Black black earth.  Fantastically filling food. And Kyiv, one of Europe’s most charming cities.

I last visited Ukraine about a year ago, back in my unaided life.  I enjoyed myself, but I was grumpy.  Really grumpy. Partly because even though it was June, the weather was terrible. It rained almost every single day. And partly because Kyiv was built on a cluster of hills, and its streets are paved with smooth cobble stones.  Or to put it another way, last year, I had a lot of trouble getting around Kyiv on foot.  I tried my best anyway, dutifully stifling any and every thought about the fact that walking was kind of hard. I blamed my shoes (Worn out surely! (They were two months old.)) I blamed the rain. I tried not to think about it and press on, mostly unsuccessfully.  I stopped for a lot of coffee (ahem, sitting/rest) breaks.  Fortunately, for me in this respect, Ukrainians (Sorry Moscow, I do love you, but coffee is NOT your strong suit.) know how to brew an excellent cup of coffee.  Still.  I didn’t feel like I really saw Kyiv or enjoyed what the city had to offer, because I was distracted by poor mobility, anxious thoughts about poor mobility, and pain.  But not this time. No. This time I was actually excited (Yes. You heard that right.) about traveling to Kyiv with the Evil Aid, because I knew that I’d be better equipped (literally) and better able to do and see the things that I really wanted to do. And was this correct? You bet it was. 150%  Yet another example of how mobility aids EMPOWER their users.  Anyway. Moving on.

No trip with aid is ever without a few awkward encounters. And, as I learned on this trip, there may even be one or two that pleasantly surprise you.  For example, the passport line at Kyiv’s Borispyl airport.  When I arrived at KBP that was an insanely loooooooong snake-like, chaotic, post-Soviet line at passport control.  And I was in the last row of seats (yeah, the ones next to the toilet) on the flight from Moscow, I was one of the last people to fall into line.  Our flight was also late, of course, so my taxi driver was waiting impatiently just beyond customs.  It was not a good scene, as my experience with such snake-like chaotic lines in the Former Soviet Union has taught me that they do not move very quickly.  I was not thrilled about an hour or more of painful standing and scuffling in place, but as the Russians say, rhetorically, “What can you do?”  But then, something entirely unexpected happened. The Ukrainian border guard who was attempting to contain the tail end of the line and direct people to the correct passport windows said tapped me on the shoulder. “Excuse me,” she said politely. “You don’t have to wait in this line. See that line over there, the short one? Go there.”  I gladly did as I was told. It turns out that at Borispyl, the expedited line is not only for diplomatic and official passport holders, it is also for families with very young children and visitors with disabilities.  That’s right; they had even affixed a sizable sticker with the universal ‘disabled’ figure on the passport control window.  I made it through in fifteen minutes, without the additional pain and loss of function from standing in place for an hour to more in the general line. That was definitely worth a big Hooray!  Why can’t all border control posts have this option, especially, ahem, the one in Midwestern Megapolis, where the line, even for American citizens, often stretches to the disembarkation zone? One does wonder…

Here a a few shots of some of the fabulous things Kyiv has to offer. By the way, unlike many other post-Soviet countries Ukraine has abolished its visa regime for Europeans and Americans.  That is, tourists can visit visa free for up to ninety days. Go!

Sofia Cathedral.

St. Andrew’s Church.

Funicular.

Dnieper River

Mother of the Motherland. She marks the WWII victory and protects Kyiv.

Delicious potato and onion filled ‘vareniki.’

Cycles.

Natalia Goncharova. The Cyclist. 1913.

There was one thing that I discovered while on vacation in Italy, that I did not expect to discover, but was very pleased to discover, is that I can still ride a bicycle. I ride much more slowly than most other peddlers, but hey, I’m well-balanced, steady, and able to hang in and most importantly, keep going.

The last time I cycled on a regular basis was durning a particularly turbulent period in my youth, when I was filled teenage angst and doing my best to stave off an outright existential crisis. What did the staving? My Wal-Mart ten speed, with its rusted bell and hot pink handle bars. My neighborhood video store. And Madonna.

Every evening I mounted my bike and escaped from my house, peddling off as fast as I could with the VHS cassette of Desperately Seeking Susan or some other cult classic of the 1980s bouncing along in my backpack as I navigated my neighborhood’s endless rolling hills. I had never felt so free before.

One thing I will say about adapting to a mobility aid is that it does often leave one feeling a bit constrained. The world around us (ahem. especially the former Soviet world) is just not arranged in a way that allows aided mobilizers to sail through it with the greatest of ease.  When you employ a mobility aid, you are its minder. It is after all an extra thing, and you constantly have to be aware of where it is in space, how you are wielding it around tight corners, in crowded cafes, up rickety stairs, in crowds, and in really tight, up-close and personal spaces (For example, the aisle of an airplane, which has more than once been the site, for me, of aided mobility folly, as I have watched my precariously balanced crutch tip over and crash into A.) someone’s lap or B.) the suitcase full of handblown glass (Seriously, yes, that happened–nothing broken, fortunately.) Aid minding (and its associated folly) does not leave one feeling carefree and unrestricted as one moves through the world.  I really miss feeling unrestricted. I think this is why I enjoyed cycling in Italy so much. From its saddle, I could cover distances that would be difficult or impossible to walk smoothly and with no disruptions. Once again, unrestricted. (Although my (dreaded) folding cane was tucked away safely into my bike basket for use upon dismount.)  And what’s better?  A week of cycling did way more for the muscles that compensate for my failed hip abductors than that damn hula-hoop that I bought a couple of months back has done.  What did I learn from this? When I leave Moscow I’m ditching the hula-hoop.  When I arrive back home in the Mid-Western Megapolis, one of the first things I’m going to do is go out and buy myself a bicycle. With a basket. And a working bell.  This also means I’m going to be in the market for a folding forearm crutch. Preferably one that will collapse to fit into a bike basket. I know SOMETHING has to exist, besides the QuickStep. All suggestions are most welcome.

One Lovely Blog.

A few days ago, Katja, over at Brokenclay, followed her awesome post on disability and empowerment with the Lovely Blog Award, an exercise in which the writer honors blogs that inspire her by listing them on her site and providing a brief description of why she finds them interesting and inspiring.  This particular grrrl was utterly flattered to see Aided Mobility in Katja’s list of honors.  Katja is one of my blogging heroes.  I stumbled upon her blog when I was living in Paris this past fall and really struggling with pain and mobility issues.  As someone with spina bifida and hypermobility EDS, I’d heard the words ‘mobility aid employment’ in more than one past appointment with assorted Esteemed Medical Professionals.  For years I’d managed to successfully dismiss all such suggestions, assuring myself (and equally frequently said Esteemed Professionals) that they were overacting, being too “Western” in their understanding of the body, and swearing that all I really needed was to intensify my exercise regime to strengthen a few core muscle groups.

(Note: I am NOT dismissing the beneficial aspects of exercise, and especially strength training.  It is not only beneficial for someone with EDS, I would go as far as to argue that it is imperative for maintaining and maximizing function.  However, exercise in and of itself doesn’t always bring about a miracle cure.  Sometimes the employment of other aids becomes necessary in order to maximize the benefits of all forms of movement, including strength training.)

In any case, the physical symptoms I’d been experiencing with increasing frequency over the years became so severe, in Paris, in the fall, despite an incredibly vigorous exercise regime, that I began to wonder if a mobility aid might really actually be in my future after all.  I tried my usual denial tactics. And I increased my exercise regime. But I also started reading disability blogs, including Katja’s, you know, just in case.  Hearing empowered individuals describe the experience of living full and active lives with the help of a mobility aid or two made me think for the first time since my official EDS diagnosis (which I received when I was twenty) that if my (then) worst case scenario–needing a mobility aid–ever came to pass in what I still believed would be the distant future (oh say ten or twelve years from now…), it might not actually be the end of the world.

Well. Apocalypse now.  My mother, after hearing about and seeing the shape I was in post-Paris/before-Moscow, insisted I see her physical therapist, a specialist in spines with rare knowledge about EDS, as well as a real doctor.  I saw the physio, who remarked that there was a definitely a problem, a kind of sort of significant problem.  A problem that would only get worse if left alone.  Enter the Evil Aid.  I’ll be honest: my first couple of days with the Evil Aid were marked by sadness and fear, and even a hint of despair and, gasp, shame.  That’s when I went back to Katja’s blog.  Reading her posts about adapting, innovating, and moving forward pulled me out of a place that can best be described as way down in the dumps.  Katja was the first person I contacted for advice when I decided to start my own blog; it’s thanks to her that this little outlet exists at all.  Thanks again Katja, for helping me come to terms, and then, move forward.

The second stipulation of the “Lovely Blog” designation, after thanking the person who honored you, is to list up to fifteen blogs that you would like to honor. Here is my personal shortlist:

1.) … …. Wobbly teetering blogging. An excellent, empowering, and highly amusing blog about coping with MS, mobility issues, and a world that is too often not malleable enough. Her mobility aid and air travel reviews are particularly amusing and informative. I highly recommend consulting them.

2.) Wheelchairkamikaze. Also an MS blogger, this man writes about his life in NYC from a seated perspective. He is also a photographer and frequently updates his image stream.  Exceedingly well written.

3.) Bookmaniac. Liz Henry is a feminist writer, activist, and computer expert living in the Bay Area. She also happens to rely on mobility aids and writes frequently about crutching, wheeling, and scooting around the city.  This is one of my favorite blogs.

4.) Flotsam. Not a disability blog per se, but Alexa frequently offers witty and pointed commentary about the American medical industry and its Esteemed Professionals.  She writes about living through infertility, pregnancy loss, and parenting a micro-preemie (Her oldest daughter was born at 24 weeks gestation.) A professional writer who also happens to be laugh-out-loud funny. Check it out!

And now, without further ado, I’m supposed to tell you seven (random) things about myself:

1.) I used to draw a lot of primitive and unskilled cartoons, which I collected and distributed in a self-published zine. (This was before the word blog entered into the common vocabulary.) I keep meaning to take this up again, the old fashioned way, with pencils, paper, glue, and a copy machine, and without the internet.

2.) I used to be a coxswain on my college crew team.

3.) I took biology in college. I hated it. I passed the time by reading Truman Capote’s In Cold Blood clandestinely, in the back of the room.

4.) I became interested in Russia and learning Russian, because I used to be a serious gymnast (The gifts of EDS in one’s youth.) I idolized the Soviet women’s teams and had a poster of Svetlana Boguinskia on my wall.

5.) I am not cool. And I am not a hipster.

6.) I’ve been to Belarus.

7.) I’ve never seen the third Star Wars or Dirty Dancing. I do not own a television.

 

Documenta (13) Dilemma.

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.