Interpreting disappointments

Stargardt's has defined my choices in life. It has also defined other people's choices about me.  Every day I face a  prejudiced world, a world that only understands "normal", that often tries to weigh me down with its distorted perspectives and its coloured opinions.


Most of the days I can easily shrug them off, but sometimes they settle deep. Some I manage to remove over time, but some just linger like so many other things in life.


I could have finished my Ph.D in French literature some years back, had the doctors not told me to stop to read.


I would have not lost a relstionship, had they not disabled me in their imagination. We were not left any choice. I've still not been able to deal with that empty space.


...


There are other things that lie beneath. Things that we think we are comfortable with. But we forget the dimension of time. We forget that everything evolves, even the past.


Some people say they have become comfortable with Stargardt's. Am I comfortable with Stargardt's? I don't know. I'm not even sure what is the right answer. Acceptannce and being comfortable are two different things.


Discomfort can be positive. Like an exercise in reverse. It can thrust you forward to force you find a way. If people act as mirrors and if we are constantly trying to adjust our reflections to their mirrors, perhaps I constantly adjust my life to not be that reflection. Because their reflections are all "normal". And I'm a different person.

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All about Pens

I used to like sending postcards to my friends. Now it is almost impossible to decipher what I write. There was a time when writing was the only way to self-discovery.

These days I try to avoid writing. I take my laptop for meetings instead of a paper and a pen. I take notes on my phone or PC. Yet there are situations when the use of a pen really cannot be avoided. Then, I find I must avoid cursive writing if I want to read it. 

Recently, a fourth grade student designed a pen  for visually impaired children to better recognize shapes and letters. And just out of a small spool of yarn, paper clip and a paper cup attached to a hollowed out pen! 

I thought I'll do a post on two pen systems for low vision which might be useful for different people depending on their needs.

PenFriend - RNIB's voice labeling system, PenFriend,  has been there since some time now and still very useful for both low vision and the blind. You can record your voice onto dime sized self-adhesive labels that you can stick on any household objects. And then touch it again with the pen and listen to the label/note. Unlike the demo video, I can still distinguish between a can of tomatoes and a can of beans. I really liked the idea about voice labels on medicines. Especially I find it difficult to read the expiry dates and sometimes I don't know what I'm popping has long expired. It can be useful for prescriptions and labeling important documents and posts which are unreadable.  These stickers can also be used as tiny reminders or notes that I can stick on pretty much everything and anywhere.It comes with a 70 hour of recording time and you can also download mp3 and audiobooks on it from your PC. PenFriend is available over Amazon for $125 and comes with 125 labels. Extra labels would need to be purchased. A pack of 381 labels is for $30.

Livescribe Echo SmartPen - This is more of a recorder pen that lets you record everything you hear,say or write. Add voice notes to handwritten notes and convert these handwritten notes to digital by using an app. Just like the SmartPen labels, Livescribe also requires a Livescribe paper which has a pattern of dots that enables to recognize and record pen writing movements. A very useful device for those who do not use or carry around their iPad or iPhone, in a classroom or in a meeting or for maintaining an agenda or a diary. It is priced at $134 for a 4GB Echo SmartPen. Livescribe claims that the special compatible paper can be printed but most reviewers seem to contradict this point. Lot of people have also complained that the handwriting recognition app MyScript doesn't recognize correctly even the clearest of handwriting. And if you need to record or write a lot, the cost of paper will soon add up to be more than the cost of a smartphone or an accessible all purpose tablet. 

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Intelligent screen readers ?

It is getting difficult for me to translate these days. For some reasons, full view magnification is no more working on my Windows 7 PC at work. I tried testing several third party accessibility software but I'm yet to find a screen reader which automatically recognizes and switches between two languages on the same page. 

I have to work on a translation tool whose interface is similar to this image. Source text is on the right side and I type on the left side in target segments. I need a reader which can recognize both French and English and swap between the two when I move my cursor from one segment to another. 


Does anyone know any intelligent screen reader tool which can solve this issue? 


I currently work with 200% magnification but I would like to use more and more of screen reader technology if I can to avoid strain. 


Update - Tried ZoomText 10. Nice upgrade from v9. Reader still supports only the language selected during installation. It is still not bilingual, Looks like either I need to adapt to how a tool reads French in English accent or just drop the idea of a Reader completely! :(

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Mistrust

It is always difficult to convince people that we are visually impaired. They look at me and see a healthy young woman who can look at them in the eye at an arm's length. And they think I'm just fabricating stories about SD to get a seat in the front row.


I was late for a theatre performance today and they sent me to the show organisers to check for a front row seat. I had to explain to the director for 15 minutes before he was partially convinced. He kept staring at my eyes. I felt very uncomfortable and I didn't want to speak anymore. I went inside and requested some people in the front row to give me a seat (this time I didn't tell them I'm visually impaired). And I got a seat! 


What do you do in such situations when people refuse to help you because they don't trust you that you are visually impaired? 

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Google's New Context-based Spell check

Google will soon roll out their new context-based spell check integrated in their browser Chrome. It might be a big relief for people with dyslexia or low vision as it analyzes the context to recommend correct spellings

So if you wrote "Icland is an icland". It will suggest "Iceland is an island". So totally cool!  Here is a link for more details : Smart Spell Check



Update: For Chrome users, a grammar and spell check Ginger extension can be downloaded from here

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Self-defense techniques

Last weekend I enrolled myself for jiu jitsu training at a combat sports academy nearby. With more vision loss, I feel I've very less preparation time if I'm attacked in the street. And I may or may not be able to run. Some people suggested using a folded white cane or pepper spray as self-defense measure but where is the time?


After a lot of research on which type of martial arts to choose, most of my SD friends recommended Jiu-Jitsu as it is more about using technique than muscle power. I like the idea. And I'm already very excited thinking about all the moves that I read about and watched online. 


I've told my instructors that I'm visually impaired and they might need to adapt the classes according to my needs. I start in 2 weeks! 


What kind of self-defense training works best for you?

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Another Interesting Portable Electronic Magnifier

Enhanced vision has launched Transformer, a portable USB magnifier that can be easily connected to a laptop, monitor or LCD. It has a 330 degree rotating camera which captures the image and reproduces the text on your device in your selected font/ background colour. It provides upto 30x magnification and 28 custom preselect colour modes.

Here is more information: 

http://www.prweb.com/releases/2012/3/prweb9241477.htm 

Price is not listed on their website but I feel it will be expensive. All products by Enhanced Vision are unfortunately very expensive. 

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Using a white cane

I fell from stairs today. I wish I could use a cane. But in India, this is not an option. I would get mugged and I don't know what else if others know I'm vulnerable.

Mostly I don't have problems, but at night, I find it difficult to guage surface changes on road. I've not yet stopped running in the evening though. But I am thinking of moving my running schedule to early morning.

Another thing which has been bothering me off late is self-defense. If I can't see what is coming, difficult to defend myself. I'm going to check this weekend for any self-defense training course if available nearby. Worse case I will order a pepper spray. 

For those of you who can use a cane, here is a "how to" video on Cane Travel

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Disease progression

Vision loss and degeneration cycle varies among people affected with SD. Neither the doctors nor your friends with SD can predict when and how much vision loss you will have. I've met people who lost complete vision at the age of 8. And I've known people who still have not lost their complete central vision at the age of 55.

Irrespective of the vision loss, everyone I know with SD is still able to live independently. With accessibility and other technologies, almost everything is possible today. Try to find out the way out. Never assume the end of the world. It doesn't exist :-)

I know it may not be easy to keep re-aligning your goals and objectives in life at every vision loss. Living at the edge gets sometimestiring. But what are your options? If you don't want to adapt, you will waste yourself and accumulate more regrets. Do not use the logic of the sighted world, do not listen everything what the sighted people tell you or make you believe. Your life is different than their and the rules are not same. I was told by doctors that I will lose vision and I must not choose a profession which involves a lot of reading (academics). I listened to them and did not enroll for PhD. It has been 7 years, I can still read books, with a little discomfort, but I can read! There is technology to help one read (readers, magnifiers). I am preparing to return to academics next year. Everything is possible. Don't give up on yourself! 

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Not trying

Living with low vision I've to every time question myself (not yet the tea spoons. sigh!), if there is a real limitation to a task due to my low vision or if I am not doing anything to get out of my comfort zone? It is easy to deny everything because it is difficult to see. Living in denial is easy, doing something despite the visual challenge means hard work, dealing with your own ego on a daily-basis
(setting up an incompatible, overdemanding timer to every activity. "Calendar: Read 200 pages today." Start. Fail. Whine. Let despair out of its hiding place. Repeat again everyday. Never learn.).

A lot of limitations we impose on ourselves have no basis in reality. Sooner I eliminate these false limitations from my life, better relationship I will have with myself.

I've not used my camera for a long time. I liked watching people, their expressions, capturing the detail. When it started getting difficult, rather than finding a new technique/subject, I simply stopped to take my camera with me. I have charged the batteries and I am going to take it out. And I will try to find new ways of capturing things.  Try and unlearn the "normal" way and adapt to "my" way. Defenestrate the excuses. Create something, even if it means creating distortions. Who said there is just one way of seeing??

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No man's land

I am neither in an able world nor completely in a disable world. Like the characters in Sartre's Huis Clos who assumed hell to be representative of physical pain and torture, I also assumed years ago that the world would eclipse on me at the later stages of Stargardt's.

I can still read books (digital formats with magnification if not paper). I can recognize people by their countenance if not by their faces. I can do almost everything as normal people but I do it differently..

But I didnt know 10 years ago that I will be okay. I always thought of extremes. To learn braille, to find a job where I have to speak more and read less (interpretation), to adapt for some dark world, without colours.Lack of awareness about the diseasae, about adaptation, about LVAs.  

In India, doctors didn't help me. No teachers suggested about extended testing times. I lived with low self-esteem as my performance in exams started to get affected as soon as 9th grade. I didn't understand why I could not complete a paper or why my score in mathematics started to dwindle when I was positive I had made no mistakes. I didn't know then that Iwas "misreading" digits...


I was trying to assimilate my world with the point of view of a sighted person. And that was the big mistake.

If you or someone in your family has just been diagnosed with Stargardt's. Don't panic.  First step, find out what you are dealing with. With technological progress, everything is possible today. Find out which visual aids you can use. Try to meet or connect with people with SD who can help you with adaptation tricks that they learnt over time from experience. Make a list of do's and don'ts with the help of your vision counsellor. Living with Stargardt's is like living the same world differently. Everything is possible but the rules of sighted world do not apply. So, second step is to unlearn to see things from a sighted person's perspective. We panic because we have always been taught to understad sighted world as normal world and everything else is an anomaly. You need to unlearn this and start to learn the tricks and ways of being in a different world. Everything is still possible in that world but different.

I'm legally blind. And I have a normal job where I perform better than my "normal" colleagues. And soon when I am ready I will complete my Ph.D in French Literature. There are no real limitations in any of the day-to-day activities. Only limitation sometimes is unawareness.

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A portable digital magnifier for all-purpose reading?

I have been trying to find in Forums on how people with low vision can do extended hours of reading. Kindle for the time being gives me access to only editions sold by Amazon. I still miss on a lot of books and especially books where the typeface is fixed.

Some people suggested desktop magnifiers which range between $2500-$4500. But I thought that surely there must be something better out there than bulky devices like MyReader2. 

I also came across Intel Reader, which is a portable scanner/reader and comes at half the price of a desktop magnifier (Amazon lists the product at $845. But you can contact Intel GE Care Innovations to check for any ongoing discount). Doesn't fit in the pocket but you can carry it in your bag to to school,  libraries, supermarket (weight: 630gm). Just like desktop magnifiers it works on OCR technology but you do not need to put the print material under a scanner. You just point & shoot to capture the printed text (e.g., a book page, a newspaper article, a restaurant menu...) which gets converted to digital text. You can view this text in large font size, customisable foreground, background colours. Or you can choose to listen to the text using text-to-speech feature. The files can also be stored in mp3, DAISY,wav file format. Yes, it is compatible with DAISY. You can connect it to your Windows or MAC to download files.


I like the concept but it seems still too bulky. And the screen is too small for reading. 

Update - Intel GE Care Innovations has also released Achieve tablet which is similar to Intel Reader in terms of features but lighter, with wider LCD tablet like display (do not search at Amazon, it will  most likely give you vitamin supplements as search result :P).

Features:  

• 7 inch display with high contrast themes
• Dual-core 1 GHz ARM Cortex* A-9 processor
• Android* Honeycomb* 3.2 Operating system
• 5.0-megapixel camera to support photo capture of:

o   8.5 X 11 page ?support for two pages but can�t exceed 8.5� x 11�

o   150 lines per page

o   8-point, 350-dpi font

• File creation (DAISY, MP3, .txt, .jpg)
• Import or capture and read and/or listen
• High-quality natural speaking voices (Only English UK and US)
• Gesture-based navigation
• Achieve Software for Windows* or Mac*
• Supports DAISY 2, 2.02, and 3; NIMAS 1:1; .txt; Learning Ally Audiobooks; and Bookshare digital books. 

Price is not available but this site lists it for around $700.

Achieve Tablet is a good solution for students who need to read a lot of print material. I would have liked if it could support MOBI, ePUB and PDF formats and serve as an all-purpose reader solution. 

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Kindle's Inaccessibility

I purchased a Kindle 3 a year ago. So far, the accessibility feature has been mostly adequate for me. Although text-to-speech and type face options depend on the publishers, which I find a huge issue. I always need to "try a sample" to ensure that I can "read" it!

After talking to some other people with low vision, I realised that Kindle still does not offer font option for page menu navigation. The Voice guide option (Menu - Settings - Page 2 first option) can help but it is not very reactive. By the time it reads out the contents, I am already squinting to find my way through on my own.

Still, I feel that e-ink does not strain my eyes if I read in enough light. When I purchased Kindle I could read easily in font size 5, now I rather choose font size 6. There are two more bigger font sizes that I can still choose.




I do not use text-to-speech option a lot, because the text-to-speech technology used in Kindle is still very basic. There is no pause between sentences which most of the times becomes very confusing.

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Reading books

Thanks to Kindle, I could again read in 2009 after a 5 year disturbing hiatus. My reading speed is still limited and I finish a book in 2 weeks rather than 2 days but I can READ.Yet, it remains a completely different experience.

For me, reading has never been an isolated activity. I have always associated a book with the external material circumstances linked with reading - the cover of the book, how I got the book (hours of rummaging through a library or a specific bookstore or gifted by a friend), outside weather, and my disposition as a reader at a given time and stage in my life.

Now, with a Kindle, there is no cover, no physical "form", no old pages, no more hunting through libraries (just search title on amazon and download with one click),

I sometimes grieve for the loss of material aspect of the book. Earlier, when I read paper books, each one had a separate physical identity with a different jacket, size, weight, each having a different odour and procuring a "physical" life of its own in my bookshelf (Samuel Beckett's "Molloy, Malone Dies, Unnamable" soaked in rain and then dried in sun, some pages of Othello's Arden edition smeared with my pink skin allergy...). It was not easy carrying Musil's The Man Without Qualities".

Now, on a Kindle everything is black and white, and customisable - font, spacing, pagination. To my annoyance, some books no longer retain their original author-intended page format and space appropriation vis-a-vis the written text. Where would we fit some of the works of Perec here, all the ambivalence between subjective and objective space?

Yet, I cannot complain. At least, an e-reader like Kindle allows me to "read" again despite low vision. And I shouldn't complain about physical form so much because I cannot read print anyways :P

I sometimes use text-to-speech option on Kindle for non-fiction books when I want to read in bus or in public. Partly to avoid reading in a moving bus or to avoid other people peaking into the page contents or sometimes to avoid a situation when strangers tell me that I shouldn't hold a book so close to my eyes. The narrator in Kindle's text-to-speech utility often ends up skipping essential pauses leading to misinterpretation and confusion. In comparison ZoomText narrator is much advanced. Although, I still find narrator or audio books too intrusive for a solitary activity (reading).

I am also these days a bit annoyed with my brain processing everything wrongly due to limited visual picture that it receives. I misread a lot without knowing that I'm misreading.

How do you manage prolonged reading with low vision? Do you have better solutions?

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Navigating in a new place

Anyone petrified of finding their way in a new place? Especially in India, where the cities don�t have a planned layout and block B may not be adjacent or close to block A or C but to block K and where no navigation device would accurately help, sometimes searching for a new address is almost like going to war! Grit your teeth and onward.


Still, my flatmate always found it odd that I know the exact order of stores on any given street when I cannot read a store name or sign even when I am directly in front of it.

But, it is just adaptation, as I cannot read I find other means, other details that act as �rep�res� (landmarks, reference points), a different set of associations from the sighted world that help me navigate.  I need to observe my surroundings more closely and memorise every detail to avoid the harrowing situation of wasting another 2 hours before realising that I was just 10 meters away from the spot when I started. 

In a new place, I would rather call up the store/friend and ask them for precise landmarks (located on which side of the road, closer to which intersection, which floor, near which metro exit, etc.). I find it reduces the area where I need to search and thereby the possibility of getting lost.

I used to feel terrified of finding my way in a new place. Over time, I've learnt to accept my limitations and ask for help. Now I'm not embarassed to ask people on the road for directions even if it turns out I'm standing right in front of my destination. I don't care what they think. I don't want to be psychologically terrified of a new address and I do not want to compromise my independene.

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