One of our challenges is writing for a wide group of people, who all understand CVI differently...for example understood as being...
What about the child with CVI - what is CVI to them? Is it any of the above? All of the above? To the child with CVI, CVI is normal.
What about the parents and carers of a child with CVI - what is CVI to them? The answer we hear most often is simply 'worry'.
There is a definition, the one most commonly currently used is:
A verifiable visual dysfunction, which cannot be attributed to disorders of the anterior visual pathways or any potentially co-occurring ocular impairment.
Does that tell us what CVI is? This definition came from a paper that looked at the different terms and definitions used, because it had all become a bit of a muddle with different groups in different countries all using different definitions.
CVI is different for everyone with CVI, and for everyone involved in CVI; moreover CVI is not a moment in time...
CVI for each affected person has a history, which could have started with a brain altering event at birth, or later in life, for example due to stroke or be becoming progressively more severe due to multiple sclerosis or dementia.
CVI has a now, the moment we live in, the worried parent, the child trying to read...
And most importantly, why we are here and are so passionate about what we do, CVI has a future, a tomorrow which can be made a little easier, a little happier, and a future that can be planned...
Planning is an important word, to plan something, especially where there are likely to be difficulties, requires knowledge of the causes of the difficulties. Sometimes planning is simple. If the visual difficulty is that text is too small to be seen clearly, then, well... make it bigger.
Unfortunately, CVI is rarely that simple. This has been our ultimate challenge; to work out a way that we can explain CVI so that each person affected and those supporting them can prepare, plan and make the necessary changes in advance. Not just respond to something that's already difficult, but actually anticipate, and prevent it being difficult to make life easier.
We are approaching our five year anniversary of working towards this goal, from a first meeting in a Glasgow Department Store. Over these five years we have learnt that there are three essential things to know, to understand CVI for each affected person:
3 (above) is the really tricky one! How can we write about a condition that is different for everyone? That can change in a moment due to an enormous number of factors from a loud motorbike passing to a worrying thought.
Our plan is to provide a personal guide to understanding how CVI affects the individual through our new section Pick & Mix, which we are currently finishing writing and hope to have on our website in a few weeks. Pick & Mix means you pick only what is relevant to you, which might be everyday difficulties, like spilling things, or tripping down kerbs etc. We hope to guide you to learn what the causes are. The term CVI alone, is not enough to think of as a cause.
The causes are the individual brain based impairments of vision, like reduced visual acuity, hemianopia or simultanagnostic vision. The causes are not the difficulties or behaviours or necessary accommodations, they can be thought as CVI Outcomes. Professor Amanda Lueck in one of a series of wonderful Conversations About CVI with Professor John Ravenscroft, uses the term root-causes to separate the causes from the outcomes. For example, if a person finds recognising faces difficult due to reduced visual acuity, then making a face bigger, maybe by standing closer, may help. But... making the face bigger won't help the person who has the same difficulty, but due to simultanagnostic vision, in fact it may make it worse.. and standing closer won't help the person with prosopagnosia either. They all have the same problem, recognising faces, but there are different causes, so different solutions. The causes need to be known if we are to plan what to do.
Pick & Mix is taking a little longer to complete than expected because areas we feel we can explain better keep popping up, which is why there are a lot of new pages at the end of this email. Things like...
Help! The importance of asking for help when needed, necessary for independence - and sometimes to avoid death!...as explained in Nicola McDowell's blog (or rather Dr McDowell, congratulations on an amazing PhD Nicola).
Video. The incredible range of uses, for learning, understanding facial expressions, recognising people and for the more able, learning about their own brain, the greatest skill for anyone with CVI.
Looking. A technique to help find things, especially when somewhere noisy and cluttered, called the Wagon Wheel Approach.
We also have a new blogger called Dragonfly, an adult who has had CVI all their life but was diagnosed only in 2018. The story is amazing, and beautifully told in the first introductory blog (below). We can't wait to hear more.
With all the different approaches and understandings, terms and definitions, there is no right and wrong, but somehow we have to bring it all together to help each person with CVI. It is only when the causes, the root-causes are understood, that we can plan, and that is our goal, and has been for nearly five years.
We hope you are well.
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.