Tuesday, November 29, 2011

To tell or not to tell

In my experience, most of the people don't care how difficult it maybe for you to live. We have all become insensitive to each other perhaps. And perhaps we all have our own set of woes to deal with on a daily basis. There is no space for others.

I've gone through phases in my life. When I was younger, people would think I fake it and they wouldn't believe I had a problem, because I was better at academics, my vision in the better eye was still 6/24 then. And usually there was never any problem with familiar places. I used to find it difficult to tell strangers (at fastfood counters or bakeries) that I cannot read the menu or tell the name of what I want. Five years back I had travelled for 30 days across Northern Europe alone with a zoom camera as my only aid. I didn't ask people for help then. 

Now I do not hesitate in telling people I've an eye problem and if they could help in reading out the menu, bus number, sign board etc. Although, I only talk about it if it is realy necessary. For e.g. at a department store, I prefer to be independent. I end up walking a lot if I am visiting a supermarket for the first time but once familiar I know where to pick what from. In case I need to buy a new product, I google the image to know what I need to look for. I'm really scared of cursive font and/or 20 page menus or the ones where the paper/font contrast is not good. In case I am not carrying magnifier, I ask them their best dishes out of starters/main course etc.

At Work

Personally, I feel you should never disclose completely about the progressive nature of your disability in a job interview or even later until you are sure that people will accept it and not create problems for you. You can state that you have low vision if you feel you would require your employer to purchase lowvisual aids for you (Screen magnifier/reader). If you can rely on windows accessibility, then you don't even need to mention low vision.

No one understands what it is to see like we see. Just like I can never fully fathom what kind of perception of the world a blind person has.

My teammates know that I've low vision and I use screen magnification (windows accessibility features). If I need to give a presentation to a client or internal staff, I prepare the slides in normal font but take printouts in large font for myself to present the slides. If other people are presenting, I ask them to provide me with large font printouts or email me their presentation before the meeting.

Recently I discussed in detail with someone from another team about my vision impairment. And this person thought that I should not be allowed to translate because I might misread and mistranslate something. I would have lost my job if this person had any authority to determine my eligibility for the role of a translator. I told him that our work is proofread before it is delivered and so far I've always had good feedback for my work and never any "misreadings" in the correction feedback tracker. I told him that I'm a proofreader as well still this person was not convinced that I should be fit for the job. 

How to explain others about Stargardt's?

(From wikipedia)
As only 1 in 20,000 people are impacted, most of the people are unaware of the condition. Also, it is difficult for the sighted to understand our condition. When my vision was better even I couldn't understand what was happening to me or what would be in store for me in the future.
First step is try to tell others that it is not some bad case of uncorrectable myopia.
Peripheral Vision 

You can explain to others that you are losing your central vision. For all human beings there is a central vision and peipheral vision. Central vision helps us to perceive details, to read, to recognize faces whereas peripheral vision (view not in direct line of focus) helps us have a broader view. You can hold your visiting card or identity card in front of them and show them if they are looking directly and using their central vision and are able to read. Then, ask them to look sideways (i.e. use peripheral vision) and see if they can read. They will tell you that they can make out the broader picture (that you are holding a card in front of them), they can notice the colour, shape but they cannot read. Explain to them that if they use their side vision, i.e. look straight ans try to perceive the view on their side they will be able to notice big objects, like trees, people walking, but will miss details about them.

Brain fudge 

Reading or recognition process is part visual and part processed by brain (association). As we can only see partially, our brain ends up guessing for us. Imagine a jigsaw puzzle with missing pieces, that's how we see the world. But for most of us, we do not see blank spaces for the missing blocks of view. Our brain recreates the blank space by filling in things from memory. So I will not see a manhole in the road sometimes, because my eyes couldn't spot it and my brain processed the image as smooth road. I misread words. In later stages of SD, some people also experience visual hallucinations - Charles Bonnet's Syndrome

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 “repères” (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.

Dealing with isolation

Today, I was reflecting on how over the years I've come to be a loner. And how vision impairment has isolated me in my relationships and limited the possibility of a relationship with other people. I do meet interesting people with whom I've some connection but howsoever I try I cannot recognize them again. Sometimes even if I have met those people several times, I cannot distinguish them from the rest. They will complain that they waved at me, greeted me and I didn’t respond. They assume I am rude or I want to avoid them.

I try and explain to them about the disease, so that they know that they should come in my field of vision for me to notice them. But then, either they don't remember or understand “my” field of vision. They confuse me with a worse case of myopia.

In a way, it shuts me from the indifferent world. And I can argue that I end up interacting with only those who would really enjoy speaking to me. Eliminates me from just-so-i-saw-you-i-must-speak-to-you ;)

On another level, it is difficult even with family and friends. I stopped communicating to parents about deterioration levels when I realised it upsets them greatly. I cannot see them helpless, weak. With friends I feel I can still talk about fears related to career, independence, relationships but I get two kind of extreme reactions - some think that it is unimaginable how I do everyday things in "my" different way and then there are some who don't really understand that it is difficult.

Over time, I've stopped expecting people to understand. SD is a key element of my life, that defines me and everything I do. Yet, I cannot share it.