Sight Stories

By Christine Brain

An excitingly different resource for those undergoing or expecting an experience of vision impairment.

For everyone involved in the process, it is an invaluable combination of personal experiences, research findings and up-to-date psychological theory and practice.

The book briefly introduces vision and vision loss before giving some

• Language: English
• Publisher: Christine Brain
• Release date: Nov 28, 2018
• ISBN: 9781912939114

Book preview

Setting the scene for our book

Our book is the result of a piece of research I wanted to carry out. It is created to be helpful and grounded in reality. I have written it to be useful for anyone with vision loss or wanting to know more about experiences of vision loss.

Losing one’s sight, whether completely, partially, or gradually, is not an easy journey. However, it is a journey, not the end of something. Life is about change, both good and bad, and sight loss can be one more part of life. With practice, perseverance and help, people with visual impairment can, and of course do, lead happy and fulfilling lives.

I have no loss of sight myself, but I do have a family history of visual impairment. More importantly, when doing research for our book, I have interviewed many who do have vision loss. Their stories show hope and success as well as discussing hardships and issues. John Lennon once said ‘Everything will be okay in the end. If it’s not okay, it’s not the end’, which resonates with people with vision loss.

You may have noticed that I keep saying ‘our’ book. That is because it belongs to all those who contributed. It also belongs to anyone who can get something from it. Our book was initially created for those who are in the situation of having visual impairment or know someone who is on that journey. However, it can also be useful for those who are simply interested. You might be a volunteer working with people with sight loss or that might be your job. The information contained in this book should be useful whether you are a carer, a family member, or a friend.

Losing one’s vision and being taken down that path is a difficult undertaking and a difficult thing to watch someone undergo. Our book is to help you through your own ‘journey’ by hopefully removing some of the bumps along the way.

I am more than just a sympathetic bystander. I am a Chartered Scientist and a Chartered Psychologist who has undertaken research that is included in our book. I have taught psychology to a great many students and have been Chair of Examiners for Psychology at A level and GCSE. As such I have written numerous text books for a very wide audience. I have also worked as a researcher and used interviewing extensively in that capacity.

The advice and guidance in our book, while being based on the stories of people who have volunteered to tell them, also has support from academic research in the field. Many of the ideas for coping, and subsequent advice offered, are supported by scientific research as you will see.

Our book starts with the stories contributed by people with vision loss. By telling their personal accounts, the volunteers hope to help others in similar situations. The second section is where I take the time to look at some research that has been done in the area of vision loss. Towards the end of the book I summarise the themes arising from the research. Where I can, I have linked each of the stories to those themes for deeper explanations.

What other people have discovered when doing their research and what we found out from our eyesight stories closely align. This shouldn’t be surprising, and it supports the advice arising from the stories in our book. These stories therefore, not only contain personal recommendations and ideas, but also have the backing of research. I have outlined the advice and recommendations close to the end of our book to give a summary (p215), which will hopefully be useful for you.

At the end of the book there is also a list of some helpful websites (p223). Also near the end of the book (p164), I have looked at the strengths and limitations of the way data were gathered for our book, to help in assessing its usefulness. After considering strengths and limitations, a list of ideas for further research is given (p164). Some of the suggestions for doing more research come from what others have said in the book and some arose after writing the book when considering what else could have been done. This is in case someone else wishes to build on what we have done here. References are included at the very end (p225) in case someone wants further information about our source materials.

Aims of our book

I have focused on two main sources of information. One source involves the eyesight stories people generously told for our book to help others, the other being research that has been done looking at experiences of vision loss.

Eyesight stories

This term is used in our book to refer to the real-life stories of those who have contributed. The stories focus on their vision and visual impairment, so they are called ‘eyesight stories’ to reflect that.

One aim of the book is to help people starting on their vision-loss journey or who are already somewhere along the path. It is thought that reading someone else’s story can help. The strategies that other people use let us learn from their previous experience, and also someone might feel less isolated if they can read about others in the same situation.

Strategies

In our book ‘strategies’ refer to how people deal with visual impairment including practical and emotional ways they use to get something done. A strategy is a plan to achieve something when the situation is uncertain.

Another aim of our book was to use the research others have done, some of which includes stories of people with vision loss. The idea is to add information to the eyesight stories gathered for our book. For example, problems with transport are a recurring theme in our stories. Later in our book, research about transport issues for people with visual impairment are included. This hopefully adds interest as well as useful information to our book.

People involved in our book

Our book involves me as the researcher and Forest Sensory Services as the provider of services for people with sensory issues in the area where the research took place. The eyesight stories mostly come from people attending Forest Sensory Services though sometimes others from further away volunteered to give their stories too.

Forest Sensory Services (FSS)

FSS is a service in the Forest of Dean in Gloucestershire providing support for people with sensory loss. Support includes practical support, such as selling devices that can help, and classes. Emotional and social support are also offered, including social interaction for those attending the courses or simply dropping in.

As our book is being put together in collaboration with Forest Sensory Services, more about FSS is explained here.

Forest Sensory Services (FSS) has its own website (www.forestsensoryservices.org) for anyone wanting to find out more. It was once known as FORGE (Forest of Dean Association for the Visually Impaired) and provides emotional support, information, advice, user groups and classes, as well as equipment and training. The Service is for those with sight or hearing loss and in 2018 the provision was extended to include a shop focusing on independent living in a wider sense.

FSS is based in the Forest of Dean, in Gloucestershire. There is an Eye Clinic Liaison Officer (ECLO) in the Service who works full-time. A team of Trustees together with volunteers provide the rest of the support. An ECLO linked to FSS in 2017 became the first community ECLO in the country, which has resulted in some more funding and will make the future of the Service more certain.

The Service provides buddying and befriending, including via the telephone. They also sell equipment for those with sensory problems and have recently expanded the provision to consider the requirements of those with independent living needs. They have applied for and received funding to run the independent living shop for the Forest of Dean.

The Service, which is a charity, has had a history of problems with funding. However, in 2017 they are beginning to come through what has been a difficult period. They provide classes or groups in computing, balance, singing, hand bell ringing and cookery, and there is a lunch club and a reading group. They have just restarted braille classes too and a craft group runs from there. A local walking group meet at FSS. FSS also have their own charity shop in the building. There are single events as well; such as a course on losing your sight and staying independent, and a speaker in Macular Week.

Forest Sensory Services won The Best Small Local Society award for 2013 as part of the Visionary Awards, which focus on sight loss charities. An ECLO (Eye Clinic Liaison Officer) linked to the Service was nominated for and reached the top three in the country for the RNIB Vision Pioneer Award for Innovation in 2017 because of her achievement in keeping FSS going over a difficult financial period. She did not win but it was a great achievement, recognising what FSS do and what an ECLO herself does. An ECLO’s story is included in our book for your interest (p108). She keeps abreast of innovations relating to sight and hearing loss, which helps her to support users. Her input is very much valued by the users.

The Service is well-supported nationally, and they have an active committee of Trustees supporting them, together with a Patron.

I became involved with Forest Sensory Services when I volunteered to offer counselling to people there. I saw how the services offered by FSS were appreciated. I also began to read about vision loss and looking at the research that was available in the field. This led me to the idea of gathering together some stories from those using FSS (Forest Sensory Services). This initial idea is what has led to our book being published. I enjoy being connected with FSS. It is a welcoming and busy place offering support and services and also laughter and listening, valuing all who go there.

About visual impairment

In order to talk about visual impairment and the issues discussed in the stories, first it would be helpful to define what exactly visual impairment is.

Visual impairment or vision loss refers to visual functioning that is below normal visual perception. To be visually impaired someone tends to have irreversible sight loss that affects their functioning. According to the ICD-10 classification, common causes are related to diabetes, Age-related Macular Degeneration (AMD), cataract and glaucoma.

ICD-10

ICD-10 is a way of classifying problems and disease by listing information about them, including their symptoms. Doctors and other medical staff use classification systems like the ICD-10 to diagnose problems.

AMD, cataract and glaucoma are explained further later in this section. The information about what common causes are is taken from work by Paige Naylor and Elise Labbé who carried out their research in 2017. More is said about this in the Research section of our book (p113).

Visual impairment/vision loss

Visual impairment refers to a decreased ability to see that tends to be more of an impairment than can be solved using glasses. Vision loss refers to partial loss of vision as well as to someone not being able to see at all. In our book ‘vision loss’ and ‘visual impairment’ are terms used interchangeably. ‘Blind’ is used to refer to people who have no vision and the term is used by someone in that situation in one of our eyesight stories.

According to NHS Digital (www.digital.nhs.uk) in 2016-2017 there were 20,605 new registrations of people being partially sighted in England alone. This is an average of 56 new registrations a day. It can help to know these numbers to see the importance of finding out more about someone’s experiences of visual loss. At 31st March 2017 there were 290,475 blind and partially sighted registrations in England, which is 5 for every 1000 people. One in three of these also has an additional disability. On top of that of course there are those that do not register their vision impairment.

The issue about an additional disability is interesting as research suggests people with vision loss need to be treated holistically to take into account all of their issues, not just their vision loss. The World Health Organisation (WHO) in 2013 suggested that 285 million people in the world have impairment to their vision ranging from low vision to full blindness, so there are extremely large numbers of people involved. In 2017 the figure was reported as 246 million, which is lower than in 2013, but still a very large figure indeed.

The WHO’s 2017 Report on Vision (which can be found on their website www.who.int/blindness/vision-report/en), reports that ‘vision loss often represents a lifetime of inequality’, which further reinforces the importance of carrying out research in this area. Our eyesight stories could be considered case study research adding to the body of knowledge in this important area.

Holistic view

A holistic view is when the whole person is considered rather than their disability or illness alone. Such an approach includes the physical, emotional, social and spiritual side of someone. The focus is on the individual with all that that entails. Statistics, being numbers, do not give the richness that a holistic view can achieve.

The WHO Report on Vision also mentions issues for people caring for someone with sight loss, economic issues arising for a society, as well as issues around the costs for the health sector. This suggests that the individual’s experiences can be missed in reports, whereas they are clearly important. This also shows that impact occurs elsewhere, including to carers and to the wider society.

There is no direct mention of the experiences of sight loss in the WHO Report on Vision. WHO figures tend to be statistics used to decide about policy rather than giving a holistic view of an individual. There is value in such statistics such as informing funding requirements, however there is also value in hearing the voices of those directly involved. This is the purpose of our book.

Statistics

Statistics come from the collection of and analysis of numbers gathered by using surveys and other such methods. An example of the use of statistics is the RNIB’s (Royal National Institute of Blind People) statement that nearly two thirds of people with sight loss are female (www.rnib.org.uk). Another example is that between 22% and 83% of children recorded as having visual impairment have other health issues as well (www.vision2020uk.org.uk).

About our data collection

Research by Jennie Small and others in 2012 reported that the 2004 WHO figures suggested that ‘more than 82% of those who are blind are 50 years old or older’ and females are more likely to be visually impaired than males. Such figures help to explain why our book focuses mainly on older people and why the contributors are often female.

It is noted that many books in the area of visual impairment focus on children, rather than on adults and older people. Our eyesight stories come from adults and many are older adults. Other books also tend to explain visual impairment rather than asking people how they cope with it. These books are often for professionals rather than ‘self-help’ books. Our book instead, focuses on uncovering the ‘lived experiences‘ of adults with visual impairment, both to record such experiences and to help others in similar situations.

Lived experiences

Lived experiences are about someone’s real life and they take a holistic view of the individual. They are accounts that come from the person themselves, so are true and represent someone’s real experiences.

Michael Tobin wrote in 2003 saying statistics do not give information about the impact of any disability on the lives of adults or children. If you would like to, you can look at what Tobin said by using the reference at the end of our book (p225).

Where researcher names are mentioned in our book, they will be researchers that have worked in the field of vision loss and information about their research can be found using the relevant reference at the end of our book. Tobin’s point about lack of information about the impact of any disability on someone’s life shows the usefulness of a book like ours, gathering, as it does, primary data from the people involved.

Primary data

Primary data refer to information gathered directly and specifically for a piece of research or for a set purpose. Secondary data are what is already known, such as what someone else has gathered. Our book centres around primary data that were gathered by asking people to give their stories directly.

Research shows that much more information from people with vision loss is required. There is evidence from many interested agencies that the needs of those with visual impairment are not being met. Tobin in 2003 also notes that the Thomas Pocklington Trust is the ‘UK’s largest provider of housing, care and support services for people with sight loss’. The Pocklington Trust survey in 2002 reported that people registered as blind or partially sighted felt their needs were not being met. For example, it was found that people with impaired vision wanted to stay in their own home where they had a mental map of where everything was. In addition to wanting to be in their own home, many were socially isolated and around three quarters of the 400 people interviewed said they wanted to get out more.

Importantly, it was found that many did not know about services and resources they could access. This was in 2002, however other, more recent studies, have shown there to be similar issues in the experiences of those with vision loss, including social isolation. The Pocklington Trust survey showed that the needs of older people with sight loss were not being met.

These are not just facts, they are about people’s lives. Interestingly, like us, Tobin in his 2003 editorial asked people to tell their stories. Our book is about people’s eyesight stories, to help others who are also on their eyesight ‘journey’ to