Eye contact and facial expression

“Across the crowded room, his dark, sultry eyes gazed into her smiling, blue eyes and showed that he was indeed interested in her. She in turn, fluttered her lashes to show that the feeling was mutual …” – I just wonder how that would be in Real Life?! 🙂 With the inability to have eye contact with others (unless they are standing/sitting very close) due to Stargardt’s from about the age of 14, one can feel cut off and a bit of a social outcast when totally missing out on this type of contact. OK, so not only the girl/boy meeting scenario but the subtle signs/messages that can be shown via eye contact and facial expression are lost on me. When, across the room, they raise their eyebrows in shock or frown in disbelief, when they wink in agreement to something I have said, when they indicate a direction by the shifting of their eyes to the right or left, when they have a poker face but smile with their eyes … all of these are lost on me.

Across the street, someone you have met a couple of times but have not told that you have a visual impairment, smiles broadly and they are met by your blank expression …. what do they think? Will they smile next time they see you? … I do not think so! 🙁 Friends who can wear glasses but hate wearing them for one reason or another, laughingly say they have that problem too … but they CAN put their glasses on …. if only I could!

How have you coped with the inability to have eye contact? Any smart tricks/tips?

Using a white cane

I am just wondering how many of us who have Stargardt’s actually use a white cane? I have talked about using one in my post about airports but thought I would post on the subject once again.

Hospitals are another place where I use my white cane a lot. However, in one of the comments to a post, it was mentioned that the medical profession is most unsympathetic when it comes to disabilities … and I concur! Hospitals tend to be real rabbit warrens with a maze of corridors, small room numbers, name plates etc. placed high up and out of visual reach of (probably) many visually impaired. I have had a number of medical appointments in the past couple of months which have involved visiting various departments in local hospitals. There is usually an information desk placed near the main entrance when one can get directions … if one can just remember them all! Once you get to the relevant department and find the reception desk to check in and pay, a number needs to be taken but a) the number on the slip is usually very small and b) the number on the digital monitor high up is neigh-on impossible to read/decipher! Some very kind nurses do shout out the next number which is of great help … IF you have been able to see that little number on the ticket! If you are first called up by a nurse, they can often offer great assistance and even offer to guide you by your elbow or politely ask how much you can see. However doctors on the whole simply expect you to folow their (usually fast) pace back to their office. They invariably point out results/graphs etc. on their computer screen or on a printed paper … so one quickly has to point out that one is unable to see such items. When it is time to leave and you ask politely for them to show you the way out (they know their maze of corridors very well, first time for me), they invariably wave a hand in the general direction of the door and corridor!

Another instance when I find the white cane does help is anywhere a queue number ticket is necessary – and boy! there are a lot of those places today – banks, drug stores, train ticket offices, liquor stores and many other shops. In the “olden days” we just formed an orderly queue and waited patiently in line! Nowadays, after having determined which of the buttons I should press for the ticket for the relevent service/queue, I usually ask a nearby person what is the number on my ticket and what number are we on now. I then carefully count the “buzzes” as a new queue number appears on the digital monitor. Of course, it is also impossible to see the number of the desk/counter one should go to in order to get service! Thankfully I usually get great help from fellow queuers who tell me as my number approaches and, finally, show me which desk/counter to go to.

I cannot say that I need to use my white cane too much in order to avoid obstacles along the way .. my field of vision is pretty good so I am able to see such. However, a white cane helps me a great deal when going DOWN stairs/steps … people then accept that I will go slower as stairs can be a nightmare if edges are badly marked. Even though I know each step is of a uniform size, I still falter a lot.

I found an interesting article on VisionAware that raises some good points, What Will People Think About Me if I Use a White Cane?. I think it is probably true what is said here about thinking that everyone stares at you just because you are using a white cane. I do feel very self-conscious when I use a white cane but, hey, anything to make Life a little easier (and safer), right?! 🙂

iPad for us?

I have now used a wi-fi iPad for a few months but, I hasten to add, I have not investigated its full potential as yet. My son helped to set up my e-mail, install the weather app, showed me how to take photos and look at them using the zoom function and, most importantly of all(!?), how I could play Rumble or Ruzzle as it is now called. Ruzzle has taken up MANY hours of fun, time-wasting entertainment time for me but now I plan to make full use of my new buddy, Paddan.

For those of you not familiar with Ruzzle, it is a 16 letter matrix word game similar to Scrabble where the aim is to challenge/invite friends to find as many words as you can in the allotted two minutes. Three 2-minute rounds make up one game. When I began playing, I was useless … the time aspect added to the stress and my fingers did not do what my brain wanted them to do and I did not “see” the possible words! On my “bad eye” days I often mistake O for D or C for O etc. Playing many practise games before challenging “real” players helped a lot and now I win more of the games. I find I usually have a lot more shorter words as it is harder for me to get an overview of the full 16 letter matrix holding the iPad quite close to my eyes. I usually concentrate on a 4 letter corner at a time and find as many words as I can before moving on to the next corner … so I tend to win by the amount of shorter words rather than on the number of letters in longer words. I also found that Ruzzle uses a very strange dictionary with many “made up” words as well as not accepting “real” words! OK, that is enough of Ruzzle for now!

So, my quest to learn about more features hidden in Paddan …. Apple describes the accessibility Vision adaptations that are available and useful to those of us with Stargardt’s (or any visual impairment) very clearly.

I have not yet tested/used the voice over function, tending to hold up Paddan closer to my eyes instead. However, this tends to give me “Pad arm ache” as my bubby Paddan is no feather-weight! I also find my nose unknowingly “presses” on some link/icon and takes me somewhere I do not wish to be! I will test the Voice Over and tell you in a later post how I have found it. In the meantime, I will also surf, read and gather links relating to the iPad and the visually impaired and include them on future posts under the Technology category.

It would be good to hear from any other visitors to stargardts.net who also like their iPad and who would like to share iPad tips and tricks.

Choice of job/career

When you have Stargardt’s Disease, choosing a career can be a challenge and, at the same time, a frustration. From day one I wanted to be a teacher but was not able to get into Teachers’ training college way back then as they said my poor vision would make the studying at college too difficult for me. This, I hasten to add, was pre-computers and the onset of the adaptive equipment era 🙂 In later years, I often wonder how I would have coped with a career in teaching; not even being able to see the facial expressions of the kids in the front row of desks and having great difficulty in seeing the actual kids in the back row of the class, managing to read and mark books/tests, reading out of a book to the kids, taking more time than norm to prepare for lessons, coping with the group on school outings, the administrative paperwork that is also connected to teaching these days etc. There are those of us who can overcome all odds and pursue their dream career … but I was not one of them.

Part-time work for me as a teenager was limited … using a cash register in a shop/restaurant etc. was impossible with the vision I had, let alone being able to see price tags. Any service job involving eye contact was also out of the question! So, how did I earn money as a teenager …. delivering newspapers, babysitting as well as housework for the families where I babysat. The families understood that I could always see their kids … but maybe could not see Junior’s runny nose from across a large room!

So, I did not pursue my dream career but what did I do? First I took a job at a children’s home thinking that I still wanted to work with children …. but, after 6 months of very long hours and few weekends off tending to 14 kids of varying ages, I felt like I had been forced to become a Mum earlier than I had intended! I then went through some office/administration jobs (always making small adjustments, for example, changing small text labels to large print labels) but then the offer of going to the RNIB Commercial Training College in London came up. I could go to this residential college for 6 months and learn to become a certified audio typist/secretary. After that, I then worked in London as a secretary with all levels of management. I had a fulfilling job but enough energy left to enjoy London’s nightlife in my 20s!

Now I work as a consultant, a web developer (which I think as being artistic secretarial work!), with numerous pieces of adaptive equipment to help me with my daily work. I use a CCTV, a large monitor (Samsung SyncMaster 24″ LCD wide screen) using a resolution of 1920×1200 with Zoom Text 9.1 set to a magnification of x8. I also use the Zoom Text black/yellow keyboard.

That is my story … but how have others coped with the studying involved to get the qualifications for their dream career/job? Determination, a stubborn streak, patience and the ability to put in more than 100% effort into the studying in order to keep up with other “normal” course buddies must play a huge role. Today, adaptive equipment sure does help …. but it does not actually do the work for you nor give you better vision! The motto “where there is the will, there is a way” is a good one! Lastly, we know that our voices can be heard so if we need help, we can ask for it 😉

“Summertime and the livin’ is easy …”

The brighter, lighter days of summer certainly make living and getting around a lot easiaer for me with my Stargardts! Living in Sweden, the summer days are longer too and late evening walks are a joy. However, once we change the clocks at the end of October, I feel like I am forced into a deep, dark cave which I have to endure until, after December 21, the days slowly … and I mean oh so slowly … begin to get a little lighter. I can then begin to walk with more confidence with the aid of lovely, longer, lighter, brighter days, and hopefully with the added bonus of sunshine, in the summer months.

Daylight is my best buddy. OK, I can still stumble over roots, edges of sidewalks, uneven slabs etc. in the middle of the day in the summer but it is nothing compared to dark winter mornings and afternoons when ice and snow are added challenges underfoot when trying to walk from point A to point B with some dignity.

OK, so in the summer months it can still be hard to find friends on a crowded beach or at an outdoor restaurant but nothing compared to the challenge in the winter months of finding friends in a gloomy, poorly-lit interior of a restaurant that also throws in a few level differences for fun!

Jogging for me on a bright sunny day can be hazardous – jogging from bright, open sunny spots into shady, shadowy woody areas can make me act like a cat on a hot tin roof …. maybe the shadows hide roots ready to bite my toes or trip me up! My eyes take longer than the norm to adjust from light to shade thus hindering me from jogging with a nice, relaxed body position!

Finding the right sunglasses is a hard task I feel …. if they are too dark I just end up having to take them off all the time, if they are too light then I still squint because of the sun. However, with the use of sunglasses, the eye contact problem is less obvious.

As a Stagardts’ sufferer, please let others know of what you like most about summer … we all have our preferences and maybe sunshine is not your buddy?!

Travelling and airports

In my 20s, when my vision was relatively good, I did the one year (1983/4) backpacking stint alone in the South Pacific visiting Hawaii, Fiji, New Zealand, Australia, Tahiti and the Cook Islands and I did not encounter too many problems because of my vision whilst travelling. I often found others in the youth hostel that were also doing my “route” and we were even going to be on the same plane so things just seemed to fall into place. I had a few contact addresses in some of the places and these contacts were only too pleased to show me around their area …. I did not have to worry about not seeing signs or getting lost whilst with them!

Today, with vision that has deteriorated drastically over the years, airports and travel in general is a real worry and challenge for me if travelling by myself. The night before a trip via an airport is usually one of restless sleep! I divide my trip from home to the airport and final destination into segments and can thus get a sense of satisfaction when each segment has been successfully completed and checked off.

I have now acquired a white cane and airports are one of the few places that I actually use it in order to get assistance. I must admit, it did not give the immediate help that I thought it would! Friends have told me that it is not obvious that I have a visual impairment as I always walk briskly and with determination from point A to point B (but would never see any friend along the way!). In other words, people seem to mistrust me using a white cane!

OK, so I could ask for assistance when I book my flight but then maybe you tend to be molly-coddled and I like to wander around a bit by myself …. can usually manage to find the toilets by following women who stride off with determination into a side corridor! I often ask other travellers who are looking up at the departure board to help me to find my gate number and I have always received the best of help and a smile. I usually ask them to point out the direction I should walk to get to the gate and then ask someone else once I have entered the gate area …. in other words, when in doubt, ask, ask, ask! Once I asked some British Airways ground staff if I had come to the right gate and received real “royal” treatment …. allowed to sneak behind barriers to a closer toilet, led to the plane and given priority seating …. sometimes such treatment is SO welcome.

However, I sometimes wonder what type of education airline staff have been given with regard to the visually impaired – or maybe they were off sick that day! At Heathrow, with my white cane very visible, I politely asked a British Airways gal if she could just tell me what gate my flight would be leaving from, to which she replied check on the board later! I politely told her that I could not see the board and that was why I was asking her. I think she then did realise her mistake and said if I stood by her desk she could tell me as soon as the gate was shown – which she did but that was the abrupt end of the assistance!

I usually ear-mark a few passengers on the same flight and then follow them (closely!) to passport control and baggage reclaim once at our final destination. I have a suitcase with a very large first letter of my surname stencilled on it so I can easily see it on the carousel.

So, do you use a white cane? Do you have any tips and tricks when travelling alone? Any airports that are a nightmare for the visually impaired?! Please share with us! 🙂

Top 10 Stargardts frustrations?

I have now lived with having Stargardt’s Disease for about 44 years! Those of us with Stargardt’s have differing visual acuities and I have no idea of what mine is right now, but maybe we share the same visual frustrations? The other day I was contemplating my top 10 frustrations about having limited vision because of Stargardts. I appreciate that many of these are also frustrations for those who have limited vision because of some other eye problem. This is the list that I came up with but I found it too hard to rank them from 1 to 10.

Because of my limited vision due to Stargardt’s, I am NOT able:
– to have eye contact with people (unless they are REALLY close!)
– to drive
– to recognise people that pass by in the street
– to “walk tall with confidence”, always fearful of unseen obstacles in my way!
– to “see” what people say. One has to listen more intently as the added “extra” of being able to see what people say across a table/room does not exist.
– to feel totally confortable about international travel by myself. Airports are a very stressful place for me when travelling alone!
– to fully enjoy watching or participating in any ball sports
– to read a book (but have adjusted to listening to books)
– to see bus numbers, signs for toilets, street names, house numbers, destination boards at stations etc.
– to see/read price tags on clothes, food etc.
The last two frustrations are lessened by the use of various magnifiers … but are still frustrations!

With regard to the first frustration on the list (I am NOT able to have eye contact with people), when I talk to a person across the table/room I obviously try to have eye contact and I think I am looking directly at them but, in fact, I am using my peripheral vision so therefore NOT looking directly at them – and they in turn look BEHIND them to see WHO I am talking to! This is a pure Stargardts frustration due to my obscured/loss of central vision. This really gets me down at times and tends to make me avoid actually trying to do this …. but, as everyone knows, one can be judged as being offish, shy, hiding something, impolite and/or insecure if you avoid eye contact with people.

Other frustrations include:
– when people look in your direction, do not use your name and talk to you but you do not see that they are in fact looking at you hence talking to you
– difficulty going down stairs (edges disappear and they seem to merge into a slope!)
– not being able to see the face hence expressions of an actor/actress at a live theatre show
– no longer able to see/read music (sang in choirs/played the flute in my youth)
– not being able to use just any computer (I must have Zoom Text)
– smart phones are nothing for me

So, could you relate to any or all of these? Do you have other frustrations due to Stargardts?