Losing my sight, and how technology helped me

23/09/2016

Introduction

Our article this week is written by one of our screen reader analysts, who shares his experiences about how he adapted to living as a blind person, and what role technology played in his life moving forward.


When I was born I was just like any other happy and healthy baby, well at least that’s what it seemed. After six months my Nan noticed that I wasn’t reacting as other babies would, I wouldn’t follow her with my eyes and didn’t appear to be seeing toys and other items as I should. After much investigation it was discovered that I had a rare condition that meant that my optic nerves had not grown as they should, and at the time I was the only person in Britain to have this condition. Even as I sit here writing this I can’t remember what the condition is called as it’s so complex.


In effect my condition left me with no sight in the right eye and only 15 percent in the left, this sounds minimal but as a child I made full use of this sight. I was able to see a significant distance (at least to me) and most importantly I could read standard print books. To me this was a gift as it meant that I could read the same books as my friends, although for very small print this could lead to eye strain. I can still remember the soreness of my left eye when reading ‘Harry Potter and the Order of the Phoenix’ in only three days, which was a total of 766 pages. This meant that as a child growing up in the 90s I didn’t really notice technology and its impact. I had my books, TV, and later on the PlayStation. I had enough sight to handwrite and that was just fine for me. The closest thing that came to technology for me was the number games on the computer in primary school, and what later turned out to be an invaluable skill as an adult, the ability to touch type, an essential skill for any child sighted or otherwise in my opinion.


Therefore it was a total shock to me as a 13 year old when my retina detached in my left eye. Overnight my sight that I’d known and taken for granted had been halved, which took away the normal print books, some of the PlayStation games and the longer distance of sight I had. I now needed to use the white long cane and adapt far more than I could at the time understand, and unfortunately at this time my stubborn nature reared its head.


It was suggested to me that I should carry a laptop computer to every lesson with me, which had a copy of Supernova installed. For those who haven’t met Super Nova, it is a magnification and screen reader package that allows those with limited vision to both see and hear what is on the screen. You might think that I’d jump at the chance to use this technology, but this wasn’t the case. To me as a teenager this laptop with its talking magnification software set me apart from my friends and made me stand out, and by the time I had set the computer up and opened a word document the lesson was already five minutes old and my friends were already ahead of me. Further to this was the fact that my emotions wouldn’t allow me to give in, because I wanted to be the same as my friends and do what they did. I still wanted to be able to handwrite, and carry on as I had before. I simply couldn’t accept that my sight was diminished, and that I needed to adapt to my new situation.


It didn’t help me at the time that my teachers wanted the best for me, and so forced me to use the laptop. I can see now that they were right and that technology was the way forward, but at the time I couldn’t accept this and so fought against this. I refused point blank to use the laptop, hindsight is a wonderful thing and I can now see that I should have used it. My emotions were running high, and it was a huge change in my life that nobody had seen coming least of all me. In time my teachers accepted my stubbornness and left me alone, and as they intended I began to see the advantages of technology. I improved with touch typing and began to use the shortcut keys that today are so familiar and vital to my life, both personally and professionally. Of course I still used the computer with some degree of sight, which meant that when my site went entirely I had to largely re-train.


Technology moves quickly meaning that a blind or visually impaired user needs not only to understand how the technology works, but needs to learn the changes quickly before they change again. Big updates such as Windows 7 to Windows 8 can be highly challenging to users, because of their extreme differences both in looks and shortcuts which is often overlooked by their creators. I learned Microsoft’s version of PowerPoint and Excel with sight, however have not yet been able to use them as a blind person as I find it hard to visualize what is on the screen. Once such packages are familiar to me, I personally find it reasonably simple to learn the changes but this I believe is not true for all users, particularly those who lose their sight later in life.


At the age of 15 my sight deteriorated further, before eventually going entirely at the age of 18. I had undergone several operations to attempt to save the sight, but eventually the scar tissue from these operations grew over the eye meaning I could no longer see. This was hard to take at first, because in my own mind it was only some scarring that blocked the sight from coming back. Also at this time the surgeon performing the final operation had given me a very positive spin on things, meaning that I went into that final operation with an unreasonable belief in success. After six months when the sight hadn’t returned, I was dropped from the patient list and left to fend for myself. I don’t blame the surgeon for not being able to retrieve my sight, as this was an almost impossible task. However the positivity of his attitude had given me false optimism, and was one of the causes which led directly I believe to what happened next. Having said that, I am hugely thankful to the surgeon for prolonging the sight for as long as he did.


I suffered a severe bout of depression, being unable to leave my bed or see any goodness in life. I couldn’t read, play on the PlayStation or any other of the fun things I had previously done. Leaving the house was a challenge now, as I lived in the countryside and had understandably relied on my remaining sight so much in the past. Even simple things like watching the TV had been taken for granted. As a huge sports fan I could no longer follow the cricket or football on TV, and couldn’t follow the games on the radio if the commentaries were there at all! In short to me life was over. I could no longer see the computer, and so had to re-train all over again.


I hadn’t been able to see my mobile phone for a year or more, and so felt cut off completely as I couldn’t text or e-mail for myself. IPhones were not yet in my sphere of understanding so I had no independence or privacy, and it felt like anything I had known so far was gone. I was lucky because I had the love and support of my fiancé later to become my wife. She showed me that life wasn’t over and encouraged me to live life again, just in a different way. She showed me that I could still have a social life, and that I could adapt. I got a Nokia phone with the Talks screen reading software on it, which meant that I could phone and text who I needed to which was great. I gradually learned to adapt, both to the technology and to life in general. Whether this was cooking without sight, or following the sport I got there gradually.


I began to use the Jaws screen reading software, which I still use today when not using other technologies for the Digital Accessibility Centre. JAWS again was a life changer, as it gave me the independence of the internet and all that comes with it. I had previously taken this for granted and learned not to do so again. As I improved I found tasks easier, and so made it through college and to university. I was lucky enough to move in with my fiancé, now my wife and we had our daughter who is now nearly four. Everything was going well until my phone and laptop broke about the same time, my phone was now obsolete and I was still unaware of the built in Voice Over screen reader on the iPhone. I felt increasingly isolated as the technology I could find to help me was expensive and out of my price range, and as I later discovered wouldn’t have worked anyway as the technology was out of date.


This was a hard period for me, as again I couldn’t accept my sight loss and I was angry with the world. Later I would come to realize how lucky I was, having both my wife and daughter and that I was still luckier than some. Audiobooks on CD were expensive if available at all, which was one of my main hobbies. I was again without a phone that I could use reliably, and my computer kept breaking which nearly cost me my degree! Eventually after talking to friends I was able to see what I did have, my family. I’ve finally accepted my sight loss. I now understand that despite my lack of sight, I’m very lucky and can still do most things just in a different way.


Thanks to my colleagues at the Digital Accessibility Centre I discovered the iPhone, which to me was a life changing piece of technology. It goes with me everywhere, and allows me to do the things that sighted people take for granted. I am now able to have audiobooks on my phone at a very low price, as well as being able to follow news and sport at the click of a button. I can phone, text, and e-mail without having to open up a laptop which isn’t always convenient. It can’t be understated what a difference this has made to my life, whether it’s ordering my daughter’s birthday present from Amazon, or watching a TV series on Netflix, my life has completely changed. I’ve grown as a person just by using this one piece of technology. Working with the Digital Accessibility Centre has broadened my horizons, and allowed me to view technology in a different light.


Speaking personally I can say that it is not always obvious what technology is out there. When my second phone had broken I found it hard to either find information about screen reading software, or funding to buy the technology. As I’ve already stated my iPhone goes with me everywhere. This is fantastic when websites or Aps are accessible, but sadly this is not always the case. I am still prevented from accessing large sectors of the internet, in particular retail websites and bookmaker’s websites. This can be annoying when for example you are attempting to buy a surprise bottle of perfume for your wife’s birthday, or to place a bet on a horse! There are sometimes work arounds that I can access as an experienced user of such technologies, but this isn’t always the case meaning that there are still some things off limits to me.


I’ve learned not to be angry with my sight but I do still become frustrated with something I can’t do, because it’s not accessible when it is within the power of people to make them accessible. I’ve been lucky enough to do some amazing things in my life so far, and I’m no longer that stubborn teenager that won’t listen to people. I’m lucky enough to have my wife and daughter, and now also have a son. He came quite suddenly one Sunday evening, and I had to deliver him myself at home without any help from medical professionals until the emergency was over. Looking back this experience was utterly terrifying, but at the time I wasn’t thinking like that. Technology has changed me as a person, as it’s helping me to develop in ways I could have never imagined. I use technology to shop for both of my kids, and to buy that surprise Daddy present that I otherwise couldn’t go to the shop for, well at least not without help in the past. Playing kids tunes on Spotify or children’s programmes on Netflix, allow me to have fun with the kids when we’re not out and about in our local park, or playing with toys on the floor.


I’ve often been asked by people what I’d give to have my sight back, and once upon a time the answer would have been almost anything. For me that statement is no longer true. If it meant losing my two kids or my wife, or pretty much anything else then I’d likely say no. For me I’d love my sight back but that’s not a reality currently, as my condition is so rare that it’s a long way off before there could be a cure. Yes sometimes there is a wistful smile and regret that I can’t see those photos with the kids in them, or to see what the kids look like but being upset all the time doesn’t help either. On mornings where the lack of sight can be frustrating I just have to play with my little boy, or walk my daughter to play school, with her as proud as punch to be with her Daddy to realize just how lucky I am. My view now is that sight isn’t everything. Yes the advancement of technology has helped this view, but for me personally I’m the luckiest guy in the world as the things I do have are so precious to me that nothing else matters.