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Blogs & News

Issue 1 March 30 2017

Hi,

Welcome to CVI Scotland's first newsletter. We have had a busy time since launching the website on 3 February 2017, which after only a few weeks is already being viewed in Scotland and across the UK, and Europe, USA, Canada, South America, Australia, New Zealand, Japan, India, Russia and many other countries.

The website is an ongoing work in progress and we are working on many exciting projects. One such project involves our trustees Janet Harwood, Louise Buggy and Suzanne Little, all highly experienced senior teachers of children with visual impairments, who have been working together to look at ways to make our information more relevant to the most profoundly disabled people with CVI. One challenge they identified was around teaching within the confines of a system that thinks all should be more 'normal'. This lead to a discussion...

What is normal?

For those of us unaffected by CVI, what we consider to be our 'normal' visual worlds can be seen as being within a range. Try our wiggling finger and raised leg visual field tests (website section: Assessing CVI - Visual Fields, Where Are They?) with friends and family. Some may have a slightly wider visual field than others. Some may see contrast to a higher level, while others can see smaller detail. When moving through their visual world, some people show remarkable dexterity while others may be confident in sports, like football, moving fast, calculating multiple distances and speeds of players on both their and the other team, so as to give their best performance. If you were to write down these multiple calculations it would probably look like some seriously scary maths, but our 'normal' brains perform these phenomenal calculations at lightening speed, simultaneously and non consciously.

Us 'normal' folk could be thought of as all visually processing within a range where the visual world our brains create is a good enough replication of the real world, for us to get by, without...

  • bumping into things
  • tripping over things
  • knocking things over
  • missing things
  • losing things
  • offending people by not recognising them
  • offending people because you can't read their facial expressions or look at them when they are talking to you.

These are just a few examples, this list of the challenges that CVI creates is endless. A person who is just slightly outside of this normal range may get by, but face challenges like being clumsy and inexplicably offending people. Fitting in can become more challenging, and as a result isolating behaviours can develop, as we explain in our Behaviours section. Further, outside this 'normal' range the challenges become harder, so that for the most severe cases of CVI where the visual world the brain produces, bears so little resemblance, if any, to the real world, those affected are considered to have no functional (useful) vision. It is different to being 'eye blind', with blindness due to CVI there may still be an overwhelming amount of visual information to cope with, but because it is not helpful in understanding the environment in order to move through it or learn from it, it can become confusing, challenging or frightening.

So what is normal? We are either all normal or none of us is normal - you choose

For those affected by CVI we regularly use the terms alternative normal or alternative normality. It is important not to see the person affected by CVI as someone we can pull into our normal range.

Gordon Dutton's second blog clearly explains that whilst CVI is a medical condition, there is no medical treatment. The person with CVI has great potential to learn and develop, but only within the parameters of their alternative normality - that's where we start the journey.

The CVI Scotland Team

In this issue...

  • Gordon Dutton's Blogs
  • Looming and CVI Frights
  • Nicola McDowell's Blogs
  • Simultanagnosia Spectrum Gallery
  • Protective Shields

Gordon Dutton's Blogs

Gordon Dutton has been sharing his knowledge and wisdom through a fascinating series of blogs, including how children with CVI learn, the role of doctors and parents and how to talk to people with CVI.

Looming and CVI Frights

Following on from our section on Optic Ataxia, we received a lot of feedback from parents describing their child's reactions in certain environments, particularly busy noisy environments. In this section we bring together some of the experiences people have shared with us, and seek the opinions of our professional advisors.

Nicola McDowell's Blogs

We are delighted that Nicola McDowell has agreed to share her journey with us over a serious of blogs. Nicola sustained a brain injury when she was sixteen. Between the ages of sixteen and thirty three Nicola was unaware that she had CVI. Nicola's first hand account of what living with CVI is like , including the many challenges she faces, is a must read for everyone with an interest in CVI.

Simultanagnosia Spectrum Gallery

Simultanagnosia is not widely understood, as Gordon Dutton discusses in his fourth blog. We have created a developing gallery of case studies to show how varied the experience of simultanagnosia can be from person to person.

Protective Shields

Another new feature written from parent's experiences, this time in relation to different experiences that calm children, when they may be frightened, due to the effects of optic ataxia. The feature shows the parent how to construct a practical toolbox of strategies.

Bringing together the first hand experiences of people affected by CVI is key to our work at CVI Scotland, to both share, and help us learn more about this complex and misunderstood condition.

This newsletter was sent out on March 30 2017. To receive future newsletters please sign up here.

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About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.