Sunday, July 17, 2011

The story of my vision impairment.

Trish from My Little Drummer Boys asked me the other day if I had a blog post on my blog about my vision impairment. It had never occurred to me to write an entire post about it before. Being vision impaired is a pretty big chunk of who I am, but at the same time, it is not something I'm all that keen to focus on  - probably because I buy into the stigma associated with disability. I know I shouldn't, but it's hard for me not to internalize a lot of reactions to my vision impairment (when people finally find out about it) from wider society - particularly prospective employers and people in positions of authority who tend to feel very self-conscious and responsible for my safety in their presence.

So, where to begin? At the beginning, I suppose. I don't remember the beginning, of course, so my account of it is reliant on what I've been told, mostly by my mum, and how I have remembered what I've been told - which may or may not be inaccurate, but I'm sure she'll correct any major mistakes in my memory.

Mum had a fairly average pregnancy with me. I was born about three weeks past my due date in December, 1971. Mum's labour with me was finally induced and was long and painful. On several occassions she was told I had died (they lost my heartbeat). Mum was a new immigrant to Australia, so her English was okay, but not great. She was labouring on her own, and she remembered hearing her parents (who's English was more limited than her own) pleading with hospital staff to be allowed into her room to see her. This was not allowed. Finally, in the early hours of the morning she birthed me with forceps assistance which left a large bruise over the left side of my face. The doctors noted my umbilical cord was very short. I was taken away to the neonatal unit (I'm assuming for oxygen and observation). Ten days after my birthday, mum was able to bring me home.

Within weeks, or a few short months, of my birth, mum started to have concerns about me. I seemed to be constantly cross eyed. She took me to the doctor, but was told I just had wind (translated: 'You're an over-anxious first time mother'.

Baby me - forget the eyes, check out those lashes!

Over the next few years I was slower than other babies to reach physical milestone such as crawling and walking. I often crawled and walked into furniture. At one point she had a visit from Children's Services over a report of concerns for my constant bruises.

I'm not sure about the details of the following couple of stories, but somewhere around the age of three my eyes straightened out on their own. Up until that point, Mum and Dad had been aware that I saw things double, and would often misjudge the placement of an object for its double. Once my eyes straightened out, I was suddenly able to pinpoint the placement of an object quite well.

At some stage, a visit to a doctor (possibly in the wake of my eyes straighten out) led to a investigation in theatre - this was after we moved to Australia when I was four and half, I believe, because I went into theatre in Sydney. The doctor doing the investigation invited a college to have a look at 'an interesting case', which brought Professor Frank Billson into my life. Professor Billson had been studying several cases (I think about 70 in Australia) of children exhibiting Optic Nerve Hypoplasia and the side effects for children with this condition.

Painting: source

Not much was known about this condition when I was a child, and still there is no clear understanding of what causes optic nerve hypoplasia as it has been found to have both genetic (rare and very random) and environmental links. Mum believes exposure to crop chemicals early in her pregnancy with me is the most probable cause, and the literature seems to support this (read the link above).

My parents were told that growth, hormonal and behavioural issues were highly linked with my condition - which is similar to, but not the same as de Morsier Syndrome.

Cat scans of my brain showed enlarged ventricals, agensis (absence) of the corpus collosum and other abnormalities. If you follow the link you'll see my brain has great black spots in it. I've had cat scans done of my brain a few times, but this last set (done in the early 90s) is the only set I have - and I had to be very stern, indeed, to get these back. Doctors love to keep them for their own records, to show in seminars, because - as many a doctor has told me, I shouldn't be able to walk or talk with that brain structure.

Professor Billson asked to see me in his suite after being invited into theatre by his colleague. Several times in the intervening years, I visited him for a 'check up'. My sight remained static, though he told me that as I aged my sight would deteriorate at an average pace, but because I have less to lose I can expect to lose vision completely before others might experience that. He was keen to find out if any children I had would be born with my condition, none have (as far as we can tell).

Professor Billson found that I had no vision at all in my left eye. He suggested my brain may have been confused by conflicting messages from both eyes and therefore refused to take messages from my left eye - basically shutting it down. My left eye still dilates in reaction to light (though slower than the right eye) and it moves in unison with the right eyes. Over the years, my left eye became lazy and significantly turned outward (27 degrees turn) and so in December 2009, I had an operation to have it straightened. How long this straightening will hold is unknown as the eye can not be exercised to strengthen the muscles supporting it. I have been keeping an eye out for pretty eye patches for the day it starts turning again - yes, I'm that vain!

The visual field in my right eye is narrow - tunnel vision. I also have a varying focus in my right eye. That means sometimes I can see fairly clearly up to about 1.5 metres in front of me (not for reading purposes though), and clear enough to recognise images for several metres beyond, and then my focus will suddenly - without warning - shift, and I won't be able see clearly more than about 30 centimetres in front of me. Seeing out of only one eye means I have faulty depth perception - I hate descending long flights of stairs. Also, I'll never enjoy a the phenomenon of a 3D movie. I have about 15% sight in my right eye.

I don't see things, as much as recognise them. I recognise people by how they move and the kinds of clothing they wear, not by their faces. Just yesterday I was at a friends birthday party and a woman arrived, and I asked Jayne for an introduction, and the woman said, 'We've met before'. It turned out to be someone I've met several times before - she'd even given me a lift home (20 minutes in the car together, sitting right next to each other and talking) and I didn't recognise her! Yes, it can be embarrassing to be me sometimes.

I don't make it easy for myself, though.

I was brought up to be very independent. Mum and Dad didn't know a lot about my vision impairment and associated symptoms and so I wasn't allowed to use my impairment as an excuse not to try and do for myself. I am endlessly grateful that Mum and Dad did this. I think not feeling disabled has helped me tremendously throughout my life.

However, it probably also means I'm reluctant to bring attention to myself by using those facilities that might help me. I don't use a monoscope (which is like a mini telescope) when out and about, or a magnifier when reading. I don't listen to recorded books (which would help me with my reading issues a lot! I know of so many fully sighted people who do listen to recorded books, but I haven't figured that out yet - I will!). I don't hang out at facilities for vision impaired people - in fact, I feel very much outside of that community. I can't relate to in the vision impaired community.

When I was ten I went to school for the vision impaired in Adelaide, South Australia, named Townsend House, and lived in the cottages one the grounds which served as dormitories for children attending Townsend and also the local hearing impaired school. Whenever we went out on excursions I remember how keenly I wished not to be associated with other children with disabilities. I hated being stared at, pointed at, treated like I didn't understand normal language. So, I learned to shy away from communities for the vision impaired.

When I read, I hold books right up to my face  Right now I'm sitting 13cm away from my 21 inch computer screen (I just measured it)... The type on my screen is 14pt, this is the minimum I'm comfortable with. I get headaches all the time from reading the screen. I find it difficult to read books for long because book print is usually around 11pt type - sometimes smaller - and yet, throughout my life I've read thousands and thousands of books because I love stories. Determination is my middle name!

I have had a lot of difficulty getting any kind of paid work. I've never had a regular job for any length of time. I've had some work through Government sponsorship - basically employers only have to pay half my salary for a period of time, and the Government pays the rest. As soon as the sponsorship is over, I'm usually let go under some very dodgy circumstances - I had one employer tell me he was afraid might drop coins on the floor and not notice, I hadn't actually done that, but he was concerned I might...

I have had and am raising four children. They've all survived to the ages of 12, 10, almost 6 and almost 3, so far. I often go out with all four of them on my own. We navigate public transport, roads, and human traffic just fine. I've completed three degrees. I've run a household - I am have sole responsibility for our utility and rental accounts, and our fortnightly budget. Yet, when I tell employers I am legally blind, I am - so far - always categorised as 'too risky' to employ. Yes, this makes me resentful. I can't do many things as fast as others, but I can work - if I had a real opportunity, I'm sure I could prove this. Only 15% of vision impaired and blind people in Australia have permanent, paid employment. The career outlook for vision impaired and blind people in Australia is grim (as far as I can see, no pun intended).

So, that is the story of my vision impairment. I don't read braille. I don't use a guide dog or a cane. One day I may find a need for these things but so long as I don't, I won't.

PS - if you're out and about and you see me, even if we know each other from elsewhere, please free to yell out and introduce yourself, don't rely on me recognising you - as illustrated above! By all means, don't grab my elbow and steer me around - if I need assistance I will ask for it.


♥.Trish.♥ Drumboys said...

Sif I am in awe of you and your determination .
I can identify with a few points but I can't imagine how much you have cope with.
Sight is indeed a precious gift.
Thank you for sharing your story.

Sif Dal said...

Hey, no problem, Trish. The only thing that really, really gets up my nose is not being able to drive - and how very car and licence oriented our society is. Everything else, well, I guess I just don't know any different!

Jayne said...

Came over due to Trish mentioning your blog, enjoyed reading your post :)
I'm vision impaired, too, optical nerve atrophy and I so hear you on not feeling like you fit in with the vision impaired community!
I use a white cane as I have no peripheral vision but also to alert people around me to get the heck out of my way lol.
Glad I found your blog, will be back to get to know you more :)

Sif Dal said...

Hi there Jayne and welcome to the blog. When out I'm often pushing a pram (though, that'll probably finish up in the next few months as the almost three year old is becoming very anti-prams, LOL) and that has also be another reason I haven't used a cane in the past 12 years. I'm all for other people using what they need to use, though, and even as I was writing this, I found myself wondering if I shouldn't rethink the monoscope and magnifier phobia I have, hahaha! Sometimes I'm my own worst enemy!

Unknown said...

thank you so much for sharing your story Sif, I found it so interesting.

I can relate to you on a couple of levels: I was born without an arm, brought up independent and told not to use my impairment as an excuse. I too shun the association with the "disabled" community because I never saw myself that way, and whilst living in Italy I never took advantage of all the government benefits I was entitled to, since in my head I don't feel like I'm disabled at all, I simply feel I'm a little different.
Of course there is no comparison as there aren't many things in my daily life that are very challenging. I admire you for your persistence in reading books and writing great posts!

Also, I haven't had issues finding work, going for interviews wearing a long sleeved suit and a prosthetic arm meant that often employers wouldn't notice for days or weeks that my arm was a little "stiff"...
It angers me hearing about your employment history, I find it absolutely outrageous that employers only see the disability and not the other amazing quality that vision impaired people have.

Tenille @ My Family Table said...

Hi, I found you via Trish also. Thank you for sharing your story. I'm disappointed by the experiences you've had with paid employment; I would have thought that people would be a little bit more enlightened these days, but clearly not.

Sif Dal said...

SaraMG, a friend's mum has the forearm of one of her arms missing, and wow, she is an inspiring woman! All disabilities (and I so prefer to call them challenges because most people with what society calls a disability, are the opposite of disabled!) come with challenges and most all of those are overcome with lateral thinking and determination!

Tenille, thanks for leaving a comment. I found the statistic on how many vision impaired people are in permanent paid work very confronting myself - I thought it would be higher, I thought maybe it was just my perception of the market that was a bit skewed, but apparently not. There is so much talk about encouraging people who can work to do so, there needs to be a lot more talk about encouraging employers to look beyond the disability and see the willingness to work!

Sif Dal said...

And no, we don't want to work in sheltered workshops - I want to use the degrees I've studied long and hard for!

Good Job!