After a Long Absence…

After three years, several major life events, and lots and lots (and lots) of travel, I have decided to return to this blog. I will still write about issues related to disability from time to time. Disability is, after all, central to my embodied experience of the world. I cannot ignore it. However, my reasons for returning are mostly practical. I need to finish a substantial project, which I will call Big Book Project, over the course of the next ten months. And by finish I mean complete and edit all four chapters of the manuscript, write the introduction and conclusion, re-write the book proposal in preparation for submission to publishers, and then wait and hope. Big Book Project is an academic book. It is central to the little career pathway I am trying to (somewhat unconventionally, it seems) carve out for myself.

Since my last post three years ago I completed and defended my doctoral dissertation (aka Big Writing Project). My Ph.D. was officially conferred. I held a postdoctoral fellowship in Budapest. And after my ten months there, I opted to return to Moscow, to work as a “research fellow” (lots of reading and writing, with a little teaching on top) at Developing International Research University. So here I am again back in my beloved city, learning how to turn my dissertation (untold academic secret: A dissertation is NOT a book. It is a very very long bureaucratic document with lots of citations of original sources with the potential to become a book and/or several peer-reviewed articles.) into a book that actual people, and not just a handful of folks with narrow, Ivory Tower vision, might want to read. This blog will be a chronicle of that process. There will be (ideally) one post  for every writing day. As it stands, I have an outline of the entire manuscript, a hodgepodge annotated bibliography, two rough chapter drafts, heaps and heaps of notes from the archive and from sources in museums and the early Soviet press, a draft of an introduction, and a (shitty) first draft of a book proposal. The task at hand is to revise and round out chapter one. I’ve been working on that for the past month fairly intensely, mostly in the kitchen of my apartment in central Moscow. From here, the work goes on:

Sunset from the balcony







After a long, busy, turbulent hiatus from this blog, I’ve decided to return.  A lot of intense things have happened since my return from the Motherland, many relating to disability and adaptation. I’ve also been working away intensely, but mostly happily on the Big Writing Project.

I wanted to come back with a short citation from Nancy Mairs’ book, Waist High in the World, on learning to live well with disability.  Here it is:

“But that’s not the way disability works.  It does not leave one precisely the same woman one would have been without it, only (in my case) shorter.  It does not merely alter a few, or even a great many, details in a life story that otherwise conforms to basic narrative conventions: the adventure, the romance, the quest.  Instead, it transforms the tale utterly, though often subtly, and these shifts in narrative tone and type arouse resistance in both the “author” and the “reader” of the outlandish plot.”

Nancy Mairs, Waist High in the World, p. 182.

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:



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.




This one is going to be short and to the point. I have something sleek and attractive to share. Behold, the Ossenberg crutch:

Ossenberg 2


Lightweight, quite, and most importantly black, it goes with everything, from distressed jeans to cashmere skirts. And importantly for anyone who has EDS, the handle is anatomic.   I will admit, however, that the grip of my heavy grey aluminum PT-issued Aid has a wider palm rest, which was slightly better at relieving some of the pressure on the hand. Since nothing is perfect and the rest of the crutch design is so fabulous, I’m willing to cope with this particular flaw.  That is, I am currently thinking of creative ways to DIY myself a wider palm rest, perhaps using tacky foam. (Hint: If you have any suggestions, please comment!) Another fine feature of the Ossenberg model, which bears mentioning is the adjustment clip.  Rather than pressing fussy buttons to move the shaft up and down to fit it to height, you simply pop the crutch’s half-ring clips on and off.  Adjustment is quick and smooth, much easier on the joints, and a lot less frustrating.  The model also features reflectors:

Safety First.

Safety First.

Unexpectedly, the reflectors have attracted more attention than any other aspect of the crutch. I have been stopped twice now on the street and issued very sweet compliments just like this: “Wow I really love your cane! The reflectors are terrific! Please tell me, where did you get it?”

If instigating crutch envy does not constitute making a fashion statement, then I do not know what does.

Speaking of clothing, accessories, and disabilities, there is a lot more on that to follow.  Until then, stay tuned.



“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.

Celebrating Yerevan.

It’s hard to believe that my time in the Motherland, at least for this round, is almost up. Only one month left before I return to the Midwestern Megapolis to finish up this seemingly never  ending writing project that I’ve started.  It is really going to be hard to leave Russia.  As crazy as this place is, I find, after living here on and off over the course of seven years, that I really love the craziness and the complexities. And yes, I even enjoy the absurdity and the paradox.  That is, when they are not driving me nuts.

I recently made one last post-Soviet expedition to Yerevan, Armenia to hunt down some paintings that I needed to have a look at for work.  The trip was a success on many counts. I found the paintings I was hoping to see and was granted permission to photograph them.  We were able to do some sightseeing outside the city, traveling to Geghard Monastery, which contains the remains of an early Christian cave church and to Khor Virap, a church on a hill adjacent to Mount Ararat and within spitting distance of the modern day heavily patrolled and highly disputed border with Turkey.  And to top it all off, Yerevan is just a lovely city, filled with pink and red sandstone architecture.  The streets are clean and tidy. The people are friendly and are eager to tell foreign visitors about their country, its history, and its cultural  highlights. And…wait for it…wait for it…Yerevan is the most ACCESSIBLE city that I have ever visited in the Former Soviet Union. Yes. It is accessible.  The sidewalks are wide and paved with smooth stones that are easy to navigate on foot and would be easy to roll over in a wheelchair.  There are appropriately engineered ramps and curb-cuts at every corner, easy to walk or wheel up and down.  And in case you don’t notice them at first glance, the Yerevan city government has placed the little ‘handicapped’ icon at wheelchair eye-level on every single crosswalk signal.  Also and in general, most public buildings seem to have ramped entries and actual working elevators.  I was so impressed and excited to see all of these earnest attempts at accessibility that I kept enthusiastically pointing them out to my friend S., who lives in Tbilisi and who made the trip with me.  She too has traveled quite a bit in the Former Soviet Union and had to admit that Yerevan was impressively accessible in comparison to most other places.  My only regret is that I wasn’t able, due to rainy fall weather, to take more photographs of all this exciting infrastructure. With or without specific pictures, Yerevan deserves some serious praise for its efforts.  Thank you Yerevan, for working to make your city and its culture easily available to everyone.

Geghard Fog

Geghard Monastery in the morning fog.

Geghard eastern entrance

Geghard entrance. Reminiscent of the East.

Evening Service Hripsime Cathedral

Evening service Hripsime Cathedral. Armenia.


After a day of sightseeing and a lovely lunch with an Armenian family, pomegranates and Armenian coffee for dessert.

Roses for sale at night

Nighttime rose vendor. Central Yerevan.

No trip would be complete without at least one serious coffee break.

No trip would be complete without at least one serious coffee break.


If You Speak Russian. And/Or If You Are in New York….

Rather than a disability post, an appeal:

Some disturbing reports have been coming from NYC’s Outer Boroughs in the wake of Hurricane Sandy.  Communities in the Rockaways in Queens, Coney Island, and Red Hook in Brooklyn were particularly hard hit.  Unlike their neighbors in Manhattan, however, many of the residents in these areas have received little official assistance.  They have no electricity, no heat, no clean drinking water, and no means of communication.  Moreover, many in these communities are elderly and disabled. Some are Aided Mobilizers who are trapped on the top floor of high rise buildings with no functioning lifts.  In the Rockaways and Coney Island, many of the affected elderly are Russian emigrants, who may or may not speak English.  That is, when help arrives, if that help doesn’t speak Russian, they may or may not be able to respond.  If you are in the New York Metropolitan area and if you speak any Russian at all, even just the basics, please consider making yourself available for a few hours to one of the grassroots organizations such as Occupy Sandy Relief NYC.

Thank you.