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??

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.

Dry eyes

A lot of people with SD complain about dry/itchy eyes. Do not ignore it. Always keep your eyes lubricated. You can get a lot of good eye lubricants over the counter (for eg. Optive). It is also a good idea to ask your retina specialist to prescribe you some anti-inflammatory eye drops as well. Inflammation may not be always visible. You may just feel discomfort in one eye (due to eye strain).Anti-inflammatory drops provide immediate relief.

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. 

ZoomReader app for iPhone 4

For iPhone users, AI Squared's ZoomReader allows to magnify and read the text in the captured image. You take a picture of the sign you want to read, it magnifies and retrieves the text from the image using OCR technology and reads it out to you. And it is just priced at $20.

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.

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?