liberated

It’s now a week since my iPhone 3GS arrived, the one with VoiceOver, an accessible device, right out of the box. And frankly, I’m overwhelmed. Apart from the fact that it is fully accessible, that it gives me an accessible camera and access to an entire workflow in photography. Because the market for adaptive technology is what it is, this means that pricing is aimed at the subsidizers, not the consumers. This in turn means that if you want to pay for adaptations yourself, you pay the premium price. A case in point: GPS navigation. I bought Wayfinder Access and Nuance Talks for my nokia cellphone, as a bundle. That set me back some 700 euros. With the iPhone, I can already use Navigon, which is an “expensive” app, as apps go and is priced a staggering 79.99 euros. And there’s the revolutionary bit about the iPhone right there. Before I had the chance to test out some apps, I was afraid that only a small and useless minority of them might be VoiceOver compliant. Not so: for every task there is an accessible or nearly accessible app: twitter, photography, gps, games, rss. And the built in apps that come with the iPhone already are accessible. This, as many users on the viphone list already pointed out, puts users of adaptive tech on an equal footing with other users. Now we no longer have to pay the premium price for basic accessibility. And that’s a liberating and revolutionary thing, history in the making as far as adaptive solutions go.

Another revolution is Apple’s spatial approach to a screen reader. From patents it seems that they intend to take this even further, by making the touchscreen tactile, but the current implementation is already a ground-breaking affair. Now that I’ve used the iPhone for a week, I can’t imagine going back to the menu driven navigation of my Nokia. Going around the touch screen and using the VoiceOver gestures now feels so natural that it is as if screenreader navigation has always been this way. But outside the world of Apple it isn’t. The wonderful thing is that all this is the expression of the fact that Apple have taken inclusive design as a central principle in the development process. VoiceOver users are a small minority of screenreader users as of yet. And the opinion of Apple’s endeavours in this field are predominantly negative in the “official” blindness world. But it’s the users who are having the last laugh here. More and more are coming to the iPhone, not out of idealism, but because it’s an attractively priced piece of fully accessible technology. Once the same spatial approach to the accessible interface is implemented in Snow Leopard, the next OSX iteration, users will gravitate towards that platform as well.

rough

J. tipped me about Marie Kessels’ novel “Ruw” (Rough), which is a novel that seeks to describe, from the inside out, what someone experiences  who goes blind later in life. I hadn’t read anything by Marie Kessels, I don’t read much contemporary Dutch literature anyway, so reading it was quite the occasion. Of course I had to scan and OCR the book, because there is no readily accessible version. I read a review in NRC Next, and didn’t like the tone of it, then Carel Peeters’ review in Parool which was better, not like the NRC review. I have my own experiences to go by, a terrible two years that were hard on me, but that had their reward too, and both reviews promised me an even handed approach, an avoidance of easy sentiment. But it wasn’t easy reading. For one thing, I kept being confused about the dating of the novel. There is mention of braille displays and a computer, but aside from that, the protagonist (“I” in this pseudo autobiographical novel) does things the hard way, and teaches herself braille to the exclusion of other modes of access. She foregoes the instruction of an O&M teacher, but chooses to make long walks at night, in order to teach herself the city from an other sensory perspective. Many familiar names and references: John Hull, Saramago’s Blindness. The novel was praised for its painstaking description of the blind experience, at least it was praised for that in the reviews, and the blurb tells me, that this book is an “ode to the anonymous, unassuming blind”. Something is wrong with that, and I kept feeling that wrongness as I read it: on the one hand well researched depictions of the changes someone goes through when she becomes blind. On the other hand, reading it was like reading a science fiction novel: it’s a construction, a reconstruction, a simulacrum of blindness.

There are two schools of blindness philosophy. One, the romantic school, prevalent in the US,  maintains that when someone becomes blind, a new person, a blind person needs to be born, the blindness fully acknowledged and part of the persona, before progress can be made. The other school, much practiced in Scandinavian countries and to some extent here, emphasizes adaptive techniques, and sees blindness as a mere attribute whose disadvantages can be overcome by learning proper techniques. In Marie Kessels’ novel, Gemma, the protagonist, the “I” teaches herself to be blind. She does this by adopting the blindness signs: dark glasses, cane, braille. This in itself shows that the book is a fantasy about blindness, despite the obvious research. Both reviews I read praise Kessels for the fact that Gemma’s inner life seems so natural. And so, her “blindness” must be a construction that is true to life. It is as if the entire experience of being black is filtered through “Uncle Tom’s Cabin”. I found some passages incredibly moving, like the descriptions of the long walks through the nocturnal city and some observations are beautifully worded and very subtle and true. I tried so hard to like this novel, but I couldn’t, I guess, because I felt taken advantage of, disparaged as a blind reader. Forced into a mode of experiencing the world that wasn’t mine and never will be mine. Kessels sets herself up to be a “near – native informer” about the inner world of blindness and apparently, to sighted observers, her depiction seems all the more realistic, because it eschews the customary heroism or sentimentality. But the novel doesn’t escape the customary blindness traps. “The blind who never made a fuss”. This is seen as a virtue, because much is made of the stoicism of the main character, Gemma. This in fact recreates the entire “blind personality paradigm” but it does so in a more clever way. I have no doubt that Marie Kessels believes in the veracity of what she has written. It’s only me who sees blindness in that novel as if in a distored mirror. And I don’t like the image, despite the novel’s obvious merits.

sucks

Well, it is safe to say that having cancer sucks.

solitary

It seems like this is the summer of my winter. A paradox: never did I feel more connected to people, never did I feel more solitary. Perhaps that is, because the next part of this journey can be explained to others less and less. I am enjoying the writing I’m doing for B., the coffee I had with J. today. I even surprised myself by going to E.’s networking thing tomorrow night. Despite the crowds, despite the fact that I feel uncomfortable that way. It may turn out alright. I need to sort out some apartment business this weekend and I’ll have a day together with D., because L.’s away to a rock climbing thing. It feels like a charmed life, and I know it will end being like this, eventually, but not just yet. I could enjoy living like this, but now, to not cling to it, to not hang on to it. To not anticipate the loss. Yes, solitary. It’s lonely out here, but I haven’t yet lost sight of you.

iphone

This time last year I was bemoaning the general state of accessibility and new technology and grieving for the accessible camera that might never be (accessibility vaporware) But now, you get a fully accessible camera and you get a great smartphone to go with it, the iPhone 3GS. Reading the flood of blog posts since it introduction it seemed that most missed the revolutionary thing Apple has done: produce a mainstream, cool device that is accessible right out of the box. And they made a touchscreen device accessible to boot. The viphone email list has been positively buzzing since the iPhone went on sale, on june 19th. It is interesting to see how liberating this is. No longer is it necessary to use expensive after market solutions to make a device like a nokia smartphone accessible. I own a nokia E71 + Talks and Wayfinder Access, a combination which set me back 1200 euro and kind of works but not quite. Now that the iPhone is accessible many things I could only dream of having at my disposal suddenly are. To have a camera, albeit a toy camera, that is fully accessible, that I can control, is an unexpected gift. Now if there are photo apps like ezimba, or camerabag and the flickr uploader that are voiceover compliant, I could control my entire workflow again, from capture to post processing to upload. I already wrote to Peter Meijer, who has developed vOICe, which I use as a sonified viewfinder on the Nokia to ask him whether he could port to iPhone. He does have an Android version available, but even with the eyesfree initiative gathering traction, Android is far from an accessible operating system. But I could imagine having an app that adds a sonified overlay to the camera and so acts as a viewfinder if you drag your finger on the screen. I can imagine all kinds of possibilities.

One of the things I considered was how I would be able to use the iPhone as a note taker if it could pair with the Apple Blue Tooth keyboard. This is not possible at the moment without jailbreaking and hacking the iPhone to load a bluetooth keyboard driver. But it should be possible now that a new group of users is starting to use the iPhone. It is remarkable what Apple’s move has unleashed. One thing is that the blind/visually impaired device market may possibly implode. Pricing in that market is aimed at subsidizing government bodies, not at individual users. But who needs the KNFB reader when someone can code an accessible ocr app that reads the text it scans with the camera? I’d pay $0.99 for that, instead of $1200. Heck, I’d pay $75 for that! A number of viphone regulars have already indicated that they’d take up coding for the iPhone, and I’ve been tempted too. It would be great if a community of blind iPhone users were to develop their own apps. In that sense, the current iPhone is an immensely empowering device and Apple cannot be praised enough for its efforts. But now I must wait for my iPhone to arrive. I’m on a waiting list.

vision

One thing I did to prepare for my quest was to have a means of getting adequate pain medication installed. This would pump the minimum amount of fentanyl directly into my spinal cavity and would keep me virtually pain-free. It seemed I had all my bases covered, as I functioned very well, with the device switched on. Or so I thought. For when I fasted, I got high on the fentanyl. But that was not my objective, and so I dialed down the device to its minimum setting and waited for the pain to come. As the pain rose, my clarity increased until I was on the knife’s edge. Then vision did come, as I sank into a grave of sound and buried myself there. All sound became vision, as I lay listening to dogs barking, the wind in the trees, the rain around me. When it was time to climb down from the mountain, I had to take my time. Four days of pain and fasting had taken its toll, and I had to retreat step by slow step, like learning to walk again. And so I made my way back to the gate, with all vision dissolved. So it stayed, precluding photography, making me silent for a while, visually. Since then, I’ve shot again, after talking about my loss of visual appetite. I concluded -surprised at myself – that it did have to do with the vision quest, with the vision I found there, which was all sound, all movement, all smell, all touch. Now I both care intensely about image making and don’t care at all. I thought about Beethoven’s Grosse Fuge, about how that is music beyond music, sound beyond sound. I’d like to release vision completely, because I never let it go, I practiced it as if I was sighted. I hope I won’t care about what the camera photographs. Freedom! Freedom!

religious

Gelovig Soms

Prijs de dag voor het avond is
voor je gouden verloofde het uitmaakt
voor het donkere deksel het donker maakt

prijs de dag en vertel voor het avond is
hoe het was wat er was dat het goed was
vertel het nog half gelovige oren

prijs de dag prijs de rotzooi
van ronkend blik het lawaai en de schrik
prijs de wind om de lekkende vuilniszak
prijs het licht op de stront de lonk van de lelijke
vrouw en de lik van de hond zonder haar prijs
de lucht van heet asfalt van zweet en patat

prijs een godganselijk godvergeten
goed lullig niet te vervangen leven
voor je leuterend strompelend uitgejoeld afgaat

prijs het
terwijl de lange nacht nadert
de duim nadrukkelijk je strot nadert

Jan G. Elburg

religious sometimes

Praise the day before it’s night
before your golden girlfriend leaves
before the dark lid darkens everything

praise the day and tell before it’s night
what it was like what it was that was good
tell it to still almost faithful ears

praise the day praise the shite
of roaring metal the noise and the fright
praise the wind for the leaking bag of trash
praise the light on shit the ogling of the ugly
woman and the dog’s lick without her price
the smell of hot tarmac of sweat and of fries

praise a godawful ungodly
good cloddish irreplaceable life
before you exit mumbling stumbling bawled out

praise it
while the long night draws near
the thumb approaches your throat without fail

ink

Crawled out of bed today to honour my appointment with B., tattoo artist. The shop where she works is one of those places that is very much in demand, so you don’t pass up on an appointment if you want your ink to be done this year. And I’m kind of in a hurry. I wanted a crow in the style of my other tattoos, which are all of the Scythian type and are one design, done by R. Since travel is out of the question at this time, I can’t get to his studio, so after some research, it was to be the studio where B. has a residency, which also happens to be just around the corner from me. As the saying goes. So I’m going for a rather large design, the crow, and some stylized birch leaves and, at a spot unrelated to the rest of the ink, a double dorje. Ink is for life – the consolation for me is that it lasts as long as my life lasts and then it disappears. It is frivolous, it serves no purpose other than decoration. B. and I sat down to discuss placement and design, then she pulled out her diary and suggested a date in september. September! My Gd! In any case it means that I need to stick around till then. It is the first time I’ve started adding elements to the design, and by a different artist than R. to boot. It is also a matter of surrendering to B.’s skill and experience: with her felt pen she outlined the design on my skin so that I could feel it, redrew it a couple of times until she felt it was right and then outlined it again for me with a sharp pen. I do love the cutting part of getting a tattoo, because it’s so tactile. After that, a tattoo cannot be felt, it is only a drawing. The one time that I really feel my tattoos to be there is inside the lodge, if I’m leading. At such moments, I do feel the difference between the inked and the non-inked. A threshold has been crossed, we’re not afraid to carry our scars.

anger

After the first day my scope of activity was reduced to being in my hammock, sleeping, drinking and outside pissing, making water offerings, sitting on a tree stump in the sun, on and off and going back to rest and think. I slept well during the first night, after that, I slept for 20 minutes, then was awake, after a few hours I’d sleep for 20 minutes, woke up, went out to piss, drink, sit on the stump. This gave my thoughts the freedom they so obviously needed. Mother Earth is a stern teacher, not a gentle one. While during the preparation for my quest the predominant emotions were sadness and a deep fear, during the quest it was anger and a neutral, washed out emotion, harsh and bare, that came to the foreground. My chant during the first two days was “I’m just a boy whose intentions are good, please Lord don’t let me be understood.” But on the third day I fell silent. I sat in my circle that I had laid out for myself, with a gate that I could pull shut after me. I just sat there, and felt the hurt and the abuse wash over me, and I had to address all those who I felt abused by. Then, I had to face myself as an abuser, because we are always both. On the fourth night, I invited a good number of people into my death lodge to say goodbye to them, and to speak what had to be spoken. One thing emerged very clearly: my role as a parent, every person, as parent. We were all children, but we are not all parents. It came to me that to be a parent is also to be prepared to die. I also thought that we are two persons: a child and a parent. Sometimes the parent is a minute speck inside of us and we remain children for most of our lives. But to die, you must also dare to be a parent, in whatever sense. I thought of all these things and spoken them. Spoke to D. and L. and said goodbye to them, choking on my love. I needed a lot of time for this: the entire fourth day and fourth night. And then I climbed down from the mountain and went through the gate, from this other reality to the everyday one. The time in the forest is a time of living through life. Re-entering is crossing over into death. The feeling of being welcome, but needing a reason to enter there is predominant. Since then I’ve made regular fasting part of my practice.

sacrifice

It seemed I had to be especially grateful to the trees that carried me, those 4 days and 4 nights. When I arrived at the centre of my spot, I had a hard time finding a place that would catch the sun’s rays, as the edge of the forest was to the north and did not get any sun. I suspected I would be cold there, if I made my sleeping place there and I wanted to find a place in the sun for most of the day. It took me a good part of the day to find a good spot and to find two trees that would carry me and my hammock. I was so relieved and grateful, that I planted my phurba at either tree, to pacify the spirits of the place, and then made a water offering for both trees. This I kept up throughout the days, making sure that I did not drink my first sip of water in the morning before having offered water to the trees. As the wind picked up on the second day, I listened to the trees to my right and I heard them groaning and leaning into each other. I considered how I was directly in the path of these trees: if they fell, they would fall on me and crush me. This I pondered for a day, then I decided to move my hammock and myself out of the way. I spent part of the evening moving my sleeping place, as the wind picked up and roared through the trees. I made offerings to the two trees for a last time, then planted my phurba at the base of the two new trees and made water offerings there. Exhausted, I crawled into my hammock and dozed off, but was awakened by the sound of a tree crashing, at about the place where I had moved my sleeping place from.