My Love of the Arbus

In my recent exploration of Diane Arbus, the acclaimed photographer of ‘freaks’, I indulged in my voyeuristic side. Arbus ‘s naked, raw exposition of the freak both frightens me and seduces me. As a person with a disability, and particularly a woman with a disability, this raw portrayl of disability, aka freakhood, provokes immediate repulsion. It is not that I found the disabled bodies repulsive, but their complete lack of “trying to be normal” has created this immensely natural aversion. Photographing the disabled in clothing which hides twisted or missing limbs, or elegantly situates the wheelchair user in positions where the wheelchair becomes a sleek assessory, all are easy to swallow. Yet Arbus photographs shows in bright glaring lights unposed, misshapen, twisted, “ugly’ bodies in all their glory. Invoking the widely popular ‘freakshow’, I along with my fellow disabled counterparts openly and loudly disparage such historical black spots, yet after my recent introduction to Arbus, I am met with the incredible seductive forces behind such voyeuristic “shows’. In looking at women with dwarfism, wearing leather dominatrix clothing or nothing at all, it invokes my shame in showing so openly my misshapen bits. Unlike the relief that most feel in seeing images of those ‘worse off then them” displaying their ‘ugliness’ like an open wound, such images create a reflection of how much I feel the need to conform to normalcy. I take great confort in the fact that I'm "beautifully abnormal". All ego aside, I have been fortunate enough to be a 'normal' looking person who just happens to sit in a wheelchair. Some limbs are abnormally shapen but through years of female cultural indocternation I have been able to hide them with fashion and make-up and a billion other beauty products. Thus, in viewing the freakshow of Diane Arbus, I am reminded of those abnormal bits of myself, both literal and figuratively. The attractiveness of such photographs is what intrigues me the most, as I believe that there is such truth shown in Arbus's photography. She shows the freaks without the show, the middle class families without pretention and celebrities without glamour. I found the picture posted above to be the most striking as for all purposes Arbus is taking a picture of a normal middle class family with a husband, a wife and two kids, but you look closer and it appears the older child has a disability and there is a distinct 'off-ness" to this family. But for me, this 'off-ness" or strangeness is what makes this family so utterly normal.

I only wish i were a subject for one of Arbus's photographs, wherein i could revel in the glory of my abnormally 'normal' bits.

On the Backs of Men

I have been confronting recently this ever haunting issue of dependence, and realizing my need for inter-dependence. Similar to most people with disabilities, I have trained, rehab-ed, struggled and fought for every ounce of independence I now have. So the idea of hiring someone to come in to assist around the house a couple times a week is just simply heinous, and I have been quietly throwing some adolescent tantrums after succumbing to the inevitable…. That Megan Smith is not an island surrounded by vast, empty, person-less bodies of water, despite all efforts to be so. Though I do believe with enough money this very well could be my future. Someone else coming into my house to vacuum has suddenly made me reflect on my fascist like desire to be independent, and how country specific this fervency is. On reflection I realized how willing I was to be completely and absolutely dependent, physically, on relative strangers in Nepal, Peru, Morocco, Costa Rica, and Algeria etc... I mean I allowed three men to carry me up a mountain, without my chair, and I allowed myself to be utterly dependent on them even in going to the bathroom. But here in America, allowing someone to vacuum my floor makes me cringe.
I realized, especially after re-reading my thesis, that my interaction with others is defined to a greater degree by public opinion and societal view of disability. To clarify, when I had such assistance in Nepal and other nations, I did not feel like charity or eternally indebted to them. Their assistance to me was equally balanced by the work I did with them, so no one was put on a higher, lower pedestal than the other. In America, no matter how kind hearted the person assisting you are, there is a general view of needing assistance as disdainful. When I go out with my mum or really anyone, they are generally viewed as my caretaker, and as such people will talk to them instead of myself. Consequently, wherever I go, I feel this constant need to exhibit myself as completely independent, even if that means telling a friend to wait in the car or even walk a little away from me so people won’t assume his/her caretaker status. This is ridiculous I know, but when someone like me struggles and works incredibly hard to live a life completely independently, it’s a slap in the face whenever I go out to have the assumption made that I have a caretaker.
In this way, I realized that this is the reason for this militant type effort to be and maintain independence in America, and how I must evolve and realize that my life is a hell of a lot easier with people on my island.
On an additional note I have realized what an amazing, philanthropic service I have been providing for the male species. After a man recently carried me into a restaurant, he appeared quite pleased with himself and all puffed up, with his wife and friends congratulating him on being such a great Samaritan, and I realized that if I have done nothing else in this world, I have done absolute wonders to a great many male egos. (and perhaps to the businesses of many chiropractic practitioners)

I am becoming a normal human being. well a least a normal woman in her twenties. I realised as i was surrounded by 16 and 17 year olds taking my driving test (written), I skipped a few steps in the development process and now must retrace. In making my childhood home my hermitage for the past few months I realised I had been travelling somewhat consistently since 15, coming home for no more than several weeks. While I am absolutely sure that leaving at 15 and all the travels have been the best thing for me, i now need to catch up on things i didn't do. Top of the list sits driving. I find it quite hilarious that after jumping out of planes, riding death cabs all over the world and zip lining with little more than a bed sheet, ha i am scared shitless o drive.
I suppose it is because i must now rely solely upon my somewhat temperamental body to control a vehicle that could very well kill me or others. Now I've done some very stupid, life threatening things in my life (a record of them is on this blog hahah) but it seems in those instances that i could rationalise it to where if i was injured in a riot in Nepal or in he mountains of Peru there was a slight cool factor, but injuring myself by rear ending a car on a grass valley roadway. not so romantic.
At any rate, the public shall not fear as after my lesson with the adaptive driver rainer, i discovered I'm a surprisingly good and safe driver.
On another note, as i left my town eagerly and was no exactly ino he high school scene, i know very few people my age. But i also realised tha as i am so accustomed to travelling every few months I have very little practice in having those normal, daily relationships (romantic or otherwise). Funnily i realised i could always use "Well, is been nice but I'm leaving the country next week". I'm actually not THAT bad but it's the same kind of sentiment, that i am now having to look a prospecive relationships as long term ones that require work and effort. At any rate, despite being jobless and having friends in a variety of timezones I am content to start my cozy hibernation in my forest enclosed mountain house with the lovely cool gray weather.

Living in Grass Valley/Nevada City is very interesting, and not a good interesting at the momentI find it incredible that 20 years after the ADA law was passed in the US that these towns, particularly Nevada City remains for the most part inaccessible. Last week I was carried into a sushi restaurant by a good Samaritan, who by the time we got to the table almost passed out from the strain. Being royally pissed off by the time we sat down at the indignity of the situation, in addition to the possible heart attack given to the poor fellow, I complained to my aunt and the waitress. Both seemed quite indifferent to the situation and my aunt even defended the restaurant by saying its very expensive and a lot of work for the owner. Needless to say my blood pressure went dangerously high and I attempted to channel my Buddha nature. In actuality, all the restaurant needed was a small plywood board with a few bricks for support costing all of perhaps $5.00. I chose to write on this topic today, as I am sitting in this cafe that I had to go around the back, move the garbage cans from the pathway , have a nice man help me over cracked pavement and another patron go into the café to bring out a waiter. This is utterly unacceptable in the US, but people don’t understand it as blatant discrimination. The majority view it as the poor disabled girl needing assistance. But having an inaccessible building is as good as posting a sign saying “Physically Disabled Not Allowed”. People hate to view it this way as it is reminiscent of signs 40 years ago which read “Colored Not Allowed”, but having inaccessible buildings means just that. Popular excuses use expense as the main factor in not providing ramps and taking other accessibility measures, which is absurd. As aforementioned, one can purchase a piece of plywood for as much as a cup of coffee. Funnily enough, the waiter wanted to give me the cup of tea I ordered for free, as he felt guilty for the trouble I went through, and I cannot imagine how much money they have lost to guilt, that could have been put towards an accessible entrance.

I am so sick of having to smile and be effusively thankful in order to be helped into an inaccessible building that has absolutely no excuse to be so.

I shall be posting “Disabled People not Allowed” on every inaccessible building. See if people question taking their business there.

I spoke at a Mobility International USA conference in Denver recently on all the topics i love to go on and on about; disability, travel, gender and mcGiver like techniques of making your wheelchair go where no man has gone. Interestingly, i realised one aspect of travel that is not often spoken of. Travel is a lonely hobby. We speak of encounters with people, places, things, monuments, cultures and religions, but they are just that: encounters. By and large, the prolific travelling population consists of loners; travellers are perpetual guests in other people lives. I believe particularly for travellers with disabilities, the experience of travel is an incredibly lonely process. And i believe it needs to be. Whether you are disabled or non-disabled, the point of travel is like any endurance sport, to push unthinkable limits and to survive completely by your own accord.
To skim the surface of countries and periodically drop into big abysses where you find yourself connecting on a profound level with different people, only to climb out again and revert to skimming, demands that you develop a self sustaining core irrespective of those around you. Its a remarkably difficult thing to do, to be this single entity moving through lives attaching and detaching.

At any rate, I'm finding it difficult at the moment to attach and involve myself in my community in northern California, after coming back home after graduating university. Finding it remarkably difficult to be directionless wanderer, ironic eh?

So if you have a physical disability the place to stay in Tokyo is Toyama Sunrise Hotel. Which is fully accessible with lovely rooms, for 4,500yen which roughly converts to 45$. For the impoverished traveller with a disability this is a bit steep, but for full accessibility and comfort 45$ in Tokyo is very very reasonable. The elevators and rooms have vraille and large print, the rooms also have accessible bathrooms with AMAZING toilets. While in the past i have not been a fan of spending time in the bathroom, my god Japanese toilets will heat up, splash you in various places, blow you dry, sing a tune and shout at you in Japanese. Something that needs to be experienced by all.

I was extremely (positively) surprised at the level of accessibility in Japan, whilst the rigid rules and obsessive formality begs to be broken by someone like me , it also begets wonderful reliability, accuracy and accessibility. The metro, which is some kind of insane maze that weaves itself in and out of Tokyo, has conductors who will set up the ramp to get over the small lip and then that same conductor will call the station where you're getting off to be ready with ramp in hand. And believe me, they are there 100% of the time. They will even guide you through crazy stations as Shinjuku where during rush hour you would be lucky to make it anywhere with all the strait-edged japanese business men flow in masses. Also if you need a handicapped accessible toilet just go to one of the local metro stations, more often then not that is the best place to find a loo.

More to come soon, I'm in the middle of finishing my dissertation for uni, so I'm going a bit mad, but thanks so much for all of your comments on my last post, I will reply soon.

Just a few hours ago, I came back from ten days in the land of the rising sun. I must say, initially, i felt great hesitance of travelling in a 'developed country' after my recent experiences in Spain but my addiction won over and i found myself on a plane heading for Narita Airport, Tokyo. I must make a confession that for the past year i have lost the particular fire, as it may be, to travel, explore, and to see what crazy ass things i could do in my wheelchair. I felt old.
I found myself thinking, 'this is too much effort', 'Japan is small, and even if they had access the Japanese are quite reserved and would not help me', 'Can't find a hotel that's accessible, must be a sign that i shouldn't go.' All of these are completely and absolutely absurd. I realised I went to Costa Rica not being completely sure i could dress myself independently, and have since visited over 20 countries. This trip has blown air and poured gasoline on that dying ember of passion i have for exploring the world. I have truly realised the power of the mind for the first time, while it may not get you up the flight of stairs, it will make you take the back, bumpy, dirt road which leads you to somewhere so much better. I feel like i have fallen in love again, which I must say is such a lovely feeling.

Japan itself is fascinating, disturbing, voyeuristic and ever so polite. I currently attend Soka University of America which is a Japanese Buddhist, albiet non-secular, based university which has strong ties to Japan. As such, we have a sister school of Soka University of Japan, which as an informal tradition the graduating seniors travel to Japan for SUJ's graduation ceremony. To be honest I really did not travel to Tokyo to attend SUJ's graduation but rather as an excuse to visit Japan. With this being said, travelling to Tokyo within any other capacity would not be nearly as powerful as my experience these past 10 days. This is mainly attributed to my meetings with donors to my university. When one imagines a donor to a university with one of the largest endowments per student as Soka has, one imagines an extremely affluent alumnae working within law offices or the corporate world. But not Soka, these donors put aside a meagre 100 yen (1 dollar) a week to donate to the university, the majority of these donors are lower-middle class people who believe so much in Soka education and the students at the university that they save pennies to support our education. As one can imagine, this was an incredibly humbling experience. We met on tatami mats wherein our gracious hosts cooked us an incredible array of delicious Japanese dishes, gave us gift after gift, and thanked us over an over again for taking the time to visit them. And all they wanted in return was for us to tel them little pieces of our life at the university. While the majority of the donors are have meager income, there are affluent donors who despite their wealth show the same humility. I was fortunate enough to meet with the Fujisakes who took me and a fellow classmate of mine to dinner. We ate blowfish, eel, sushi, sashimi, drank the best sake and ate the most delectable fish atop one of Tokyo's best hotels. We had birds eye view of the neon lit Tokyo 58 floors below us, lit and sparkling like some constellation on meth. Mr Fujisake spoke of his humble beginnings and his deepest desire to now, that he has worked hard for years, to donate his wealth to the education of youth. That both he and his wife felt the greatest honour in our visit, he promised a lifetime contribution to SUA as he had now seen the result of his donation. My education at this university, while always being conscious of the generous scholarship from the university, has always been quite selfish. The education was for me, the school as there to be utilised by me, and what i got out of the school was to be mine.

i realised through the meetings with the donors, that my education was for the betterment of society. these strangers were funneling money into my education because they felt me capable of masking a huge difference in the world. While seemingly simplistic and shallow, this was a powerful revelation for me and has thus renewed my passion for learning in the last few months of my undergraduate.

The next post will involve the amazing and exciting adventures within Tokyo, all which were certainly disability friendly and mostly legal :)