Family Stories

Content of the Family Stories and Blogs is the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.

Samuel Wilkins – Using technology in daily life

Samuel and his dog PilotSamuel lives in Gillingham in Kent. Norrie disease means that Samuel is blind, partially deaf, and on the autistic spectrum. Samuel volunteers as a telephone befriender for carers. Samuel says ‘I find daily life fairly easy to handle, and I do my best to concentrate on the things I can do, rather than what I cannot do’. True, there are times when I get frustrated, and sometimes I feel I need to let off steam, but for the most part, I don’t let it get to me.  Moreover, my Christian faith is very important to me, and helps me get through having disabilities’.

Samuel says ‘It’s been very important for me to know how to use technology and to fix any bugs I find, and to keep on top of what is available. Technology is very important for blind and partially sighted people because without screen readers on computers and phones, Braille tablets, adapted domestic equipment and accessible toys, (to name but a few examples) we would not have so many advantages as fully sighted people.  However, it is also a good idea to find equipment that can easily be adapted by you personally. I have marked the knobs on an oven with a tactile marker, which is less expensive and easier to maintain than buying an expensive piece of specialist equipment’.

One of the top pieces of technology I have used is a screen reader on the PC.  I used the Window-Eyes screen reader from 2003, up until it ceased development in 2017.  Since then, I have been using the NVDA screen reader, but I also have experience of Jaws.

Regardless of the screen reader used, they are invaluable tools for anyone on a PC or Macintosh computer, as they can give access to all sorts of features, such as editing text, reading emails, working with the internet and scanning documents and converting Kindle books.

I also learned to touch type, which is a very important skill to have, as it makes writing documents a lot quicker.  Here blind people have an advantage over their sighted peers, many of whom cannot touch type or do not touch type well.

Another piece of technology I use a lot is the BrailleSense Braille tablet.  This is an Android based tablet that has many functions, including word processor, schedule manager, email, web browser, the ability to connect to phones and computers, and the ability to download apps from the Google Play store. This device, and other similar products, such as the BrailleNote, can be invaluable in many situations e.g. reading books, working in a classroom, office work, and writing notes.  In fact, these technologies can make learning Braille easier for both blind and sighted people, as the Braille is very clear, and since there is a screen as well, a sighted person can compare what a print symbol looks like with the same symbol in Braille.  I would even say that despite what some people have said, Braille is not dead, and if you have the ability to learn it, then it will be invaluable to you’. 

My IPhone is something I never leave home without. Every iPhone has a screen reader function (voiceover) built in, and don’t worry if you have an android phone, a screen reader can be installed.  Even with a touch screen, it is possible to learn how to use these phones in a relatively short time, and if using a BrailleSense or BrailleNote, all functions can be controlled by the Tablet, so all private information is read in Braille while the iPhone stays safely in its case. Not only does this make your information more private, but it also means you can text, or email with the speech turned off, thus avoiding annoying fellow train passengers or office colleagues with a constantly chatting phone.

There are countless apps that can be downloaded onto accessible smartphones, however it is often trial and error as to whether they are accessible. I often use the Moovit app (a public transport information app) because I travel around Kent regularly, and need to plan my journeys. I also use GPS on the phone, however I would advise caution when using any form of navigational aid. GPS systems cannot warn you that someone is coming up to you, or stop you from bumping into a lamppost. They also can’t tell you if it is safe to cross the road, or if this particular road has four way traffic.  Also remember that the map data may not always be up to date.  GPS systems won’t replace your cane or guide dog either. “

David Wilkins

David Wilkins‘There is no reason why Norrie should hold you back. Indeed it will only hold you back if you allow it to’.

David has Norrie Disease and says ‘Even I still can’t quite believe it!’ David is blind with no light perception at all, partially deaf with hearing aids in both ears and dyslexic. David says ‘I am disabled, and it is thanks to Norrie that I am disabled. But there is no reason why Norrie should hold you back. Indeed it will only hold you back if you allow it to.’

David says that ‘It is thanks to my parents I have gone from strength to strength in my life. I’ve done a 12000 foot parachute jump from a plane (not solo), I’ve sailed the high seas on a tall ship for the disabled which involved climbing the mast right to the top and getting absolutely drenched more times than I care to remember.’

David has been encouraged to follow the dreams he has as much as he can. He lives alone in a house of his own and has help with cleaning and looking after it, but he cooks, washes and looks after himself. David has also worked In South Africa, Lincoln and Guernsey as a journalist whilst pursuing his ultimate goal of being the BBC’s foreign correspondent in the city of Jerusalem (this hasn’t happened yet) and he continues to seek adventure wherever he can find it.

David’s attitude to life is incredibly positive and he says ‘Your dreams may be that you just want to make a cup of tea without any help, cross the road on your own, live alone one day and have a family. Maybe you are a parent in the Norrie community and you want to know whether your child can succeed, and what help they need from you. Maybe you’ve been told so many times what you cannot do or what your child cannot do that you’re finding it hard to decide what you can do for yourself but I believe and know that you can dream and achieve the undreamable’.