I Can See Clearly Now: Understanding and Managing Blindness and Vision Loss

By Cameron Algie

This is a comprehensive, highly readable guide for the blind and vision impaired, their sighted families and friends, professionals, service providers and employers. It shows how someone can successfully adjust to vision impairment, and dispels fears, misinformation and prejudices.

The book has 18 chapters divided into three parts. In the

• Language: English
• Publisher: CD Algie
• Release date: Aug 30, 2021
• ISBN: 9780645262308

Cameron Algie

Cameron was born and raised in West Gippsland, Victoria, and in the normal course of things, may have gone on to remain a farmer to follow family tradition. However, in the summer of 1968-69, when walking through fields where a full harvest moon hung low, this golden orb suddenly disappeared. Within a few seconds the moon reappeared and there were no clouds in the sky. This mysterious event became the portent of future drama. Cameron was diagnosed to have a degenerative retinal disease with the rather droll name of retinitis pigmentosa (RP), with a prognosis leading to inevitable blindness.Despite his vision impairment, after studying Law at Monash University, Cameron, became Chief Executive Officer for the industry body representing Cooperative Housing Societies. In his Government Relations and Industry Development role, he created an environment where funding for home loans to this sector grew from $3 million in 1981, to over $680 million nine years later.During this period, Cameron worked with his wife to establish a Society for RP research. In recognition of this and his Housing Society work, he was made a Member in the Order of Australia in 1993.Turning back to the Law, Cameron conducted major test cases in nuisance and equitable interests in property, becoming a Member of Planning Panels Victoria, the ministerial advisory body on planning matters.In a final career change, he later became a Facilitator with Vision Australia where his life experiences and those of clients now form the basis of this book.

Book preview

Introduction

For over twenty-six years while working as a lawyer and CEO, I lived in constant apprehension, if not all-consuming dread, of making mistakes or failing because of my poor sight brought about by my degenerative genetic condition. Having no central vision, but quite reasonable peripheral sight, I lived in a limbo land, a world of neither being totally blind nor fully sighted, of being detached and yet connected, being complete and yet unfinished.

Sometimes in my legal career, I went to Court so gripped by fear that I became debilitated with diarrhoea and mentally paralysed by fear brought on by nervousness. These insecurities also contributed to a dramatic family breakup in 1999.

While extremely arduous and not to be recommended, this experience actually prepared me well for the fourteen years I was to later spend facilitating client peer support groups for people who were blind or vision impaired. This had the effect of normalising my own loss and allowed me, for the first time, to work without fear of perceived judgement.

As I listened to the many heartfelt and sometimes shocking stories of clients, I worked with them to solve their multifarious vision loss issues. In turn, these stories empowered me to give back to these wonderful people, the insight I gained from them. Retelling their stories explains why so much stigma and nonsense still surrounds vision loss and that there is an ongoing need for greater enlightenment. The many case studies and examples I use in this book are taken from actual one-on-one discussions, but, unless consent has been provided, names have been changed to protect privacy. These stories also come from group discussions with clients and many autobiographical stories with references. Not only do they illustrate the range and depth of feelings experienced, the misconceptions so often found, but they also tell it how it is — a lot of grief, many fears, irrepressible humour, undaunted courage and a compelling story which says that life does not end with sight loss, it is merely the beginning of a new one.

In writing this book it is my hope that these stories — ranging from those of alpha high blind achievers to the experiences of the everyday person with vision loss — will fill a gap in our knowledge surrounding sight loss. People often said they found it too hard to talk about their vision loss with families or friends. As a result, isolation became a common outcome. ‘They don’t understand me,’ ‘Take over and won’t let me do things,’ and ‘Don’t know what to say and turn away,’ were oft-repeated regrets.

In many instances, especially with teenagers, often as a result of peer pressure, they said, ‘I don’t want to use a computer when my classmates don’t.’ In this way, isolation becomes a greater issue than blindness itself. Teenagers and many adults refused to face up to vision loss, a response known as ‘denial and avoidance’.

In other examples, clients were too fearful of informing their employers, and unable to tell their boyfriends or families. Extraordinary? Well, yes if you are not exposed to sight loss. However, think for a moment, how would you feel if a doctor said, ‘I can’t help you; you are going blind.’? Then you are turned out to fend for yourself. Yet, this still happens all too frequently and people are not prepared for the shock of sight loss.

Most people on learning they are to lose their vision, hold deepseated, yet perfectly natural fears and anxieties, perhaps a strong sense of failure and resulting low self-worth.

With the invisibility of partial sight loss, people say, ‘Oh, you don’t look blind!’ A response which only adds to embarrassment, where withdrawal or disengagement is easier than having to try and explain yourself. Yet, despite the seriousness of this, there is no easily accessible and comprehensive information available in one volume for people who are blind or vision impaired, or for the sighted, on how to face and understand these intense feelings associated with loss of sight, and then gain the practical skills required for leading a successful daily life. This, I felt, is another compelling reason for writing this book.

Approximately one in five Australians has some form of disability. Yet if this is the case, we might expect a broader understanding. According to a recent ABC Media 2019 survey of 54,000 Australians in Australia Talks, it was identified that 75 per cent of respondents said they only ‘occasionally, rarely, or never socialize with people with a disability’. Unemployment for people with vision loss is five times greater than their sighted counterparts. So we do have a societal problem worth talking about.

This book provides a comprehensive resource and explanation of the vision loss psyche. I want to show why blindness and vision impairment should not be seen, as is so often the case, as a ‘fate worse than death’! While there are approximately 570,000 Australians with some form of vision disability, only 3 per cent are totally ‘black’ blind. The rest have varying degrees of sight loss. This then surely questions beliefs about blindness. Why is it so feared? Why do others think that once a person is vision impaired they are a liability or useless? How can you respond to the associated loss and grief trauma? What are some of the complete absurdities and humour experienced? What practical tips will allow re-skilling and getting on with a life different to the one you may have lived before?

Also, in preparing this book, chapters are established to be read separately if required, on a topic based approach for easier reference as a resource, or reference book. This approach explains why in some instances, repetition of concepts may occur to reinforce a point.

In answering these questions, I hope to provide a highly readable guide for the blind and vision impaired, their sighted families and friends, professionals, service providers, educators and employers, dispelling much of the misinformation existing about blindness. In the end, to understand that doing things differently is a strength, not weakness and facing up to this is, as with many other disabilities and problems, mostly about attitude.

PART ONE

Insights

1

Blindness and the

Many Faces of Grief

‘Those who do not weep, do not see.’

Victor Hugo Les Misérables

‘Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.’

William Shakespeare, Macbeth.

Blindness is, ‘worse than chains, dungeons, or beggary, or decrepit age.’

John Milton

The Emotional Impacts Of Vision Loss

Losing my sight fifty years ago at a time when I loved reading, relied upon a photographic memory and as an artist, loved light, colour and beauty, was heartbreaking and damned tough, to say the least. At the time vision loss takes place, it can afront the very core of your self-worth. In my own case, I even rejected the love of a good woman, believing no one would want to marry a blind man with no future, a view expressed by other men I was to later meet. In those early days, I felt like Dr Jane Poulson from Canada, who states in her autobiography, ‘Nothing could break through the thick layer of anger, fear, loathing and resentment that enveloped me during those dreadful days.’¹

From 1981 to 2005, I hid the extent of my vision loss, fearful of its impact upon work prospects, or of being judged to be a loser. Like many, I also internalised grief. I used silly excuses when asked to read something, such as ‘Oh, I’ve forgotten my reading glasses!’, and by doing so, only perpetuated my struggles. It was many years later, after talking with so many others who reacted similarly, that I found myself somewhat relieved to discover that I was not alone with these inner feelings.

During this time, I encountered misconceptions about vision loss, discrimination, sometimes disbelief, sometimes curiosity and often intrusive requirements to explain my vision impairment. Many people I encountered with vision loss, believing nothing could be done, also thought and said that ‘Losing sight was a fate worse than death!’ But, on thinking over this latter statement, I began to wonder how could the speaker, not having experienced the latter event, make such a comparison? Death is final, vision loss is not. Nevertheless, it’s a commonly held belief. Even the famous blind mountaineer, Erik Weihenmayer, the first and only blind person to climb Mount Everest, said of his early sight loss:

‘The fear of blindness had loomed over me for so long and I had never resigned myself to it. It felt like what I imagined dying would feel like and no matter what I felt, what I feared most, this death was coming… I had not a clue as to how I would survive as a blind person, how I would cook a meal, walk around, read a book, but trying to live as a sighted person became more painful than blindness could ever be… I also couldn’t accept myself as being blind. But one thing I knew, compared to this in-between world, total blindness couldn’t be any worse, or any more terrifying.’²

Based upon my own experience, I eventually realised that so much about our attitude to vision loss was formed by our perceptions of blindness, the stigma of disability and of how we subjectively interpreted the impact. It was how we thought about these factors which was as great a handicap as any physical manifestations. As Shakespeare said in Hamlet (Act 2 Scene 2), ‘For there is nothing either good or bad, but thinking makes it so.’ Essentially, as Erik Weihenmayer confirms, when you push through the barriers, you realise it’s all about attitude.

However, such loss can never be greater than death. It is actually the shock of lifestyle change brought about by sight loss, our attempts to keep on with our lives as ‘normal’ and our inability to openly grieve over this loss, that I think we are not prepared for and quite logically, find it difficult to know how to cope with this change. But, it is not all bad. Many people with vision loss I met over fourteen years faced their difficulties with equanimity and general cheerfulness: ‘And so hold on when there is nothing in you Except the Will which says to them: Hold on!’³

Looking back, I can see clearly now that my initial beliefs were misguided, but then, how was I to know? Now, having undertaken my journey, like Ulysses, survived, re-skilled and gone on to success, my experience has given me a definite advantage when talking to others. The moment I mentioned that ‘I’ve got bad eyesight too!’ attitudes of clients changed dramatically, for they felt that someone could understand what they were going through. With this connection I was able to penetrate, then understand, barriers usually thrown up to protect sensitive feelings.

Vision loss, or even partial diminution of this vital sense, arouses such strong feelings of grief and fear that many participants in my group discussions, even those who had been losing their sight for some years, said it was the first time they had been able to talk about it. But why is this so? It is difficult to comprehend that, for many, grief connected with sight loss is as intense as grief associated with the death of a loved one, which explains why people say they would ‘rather be dead’. It is after all, the loss of a ‘sighted’ life which we grieve over. With death of loved ones, however, we are all onlookers and authorised to grieve by society’s rituals for mourning. With vision loss there are no such ceremonies or rituals, we may internalise feelings of loss and bear grief for a lifetime. However, positive intervention at an early stage of vision loss can turn this negativity around.

When we realise that vision represents 85 per cent of our sensory capacity,⁴ the shock associated with losing so much can be understood. Nevertheless, having to give up work, driving, reading, seeing loved ones and so on, quite naturally, becomes very intense. Many people I spoke with about sudden sight loss said, ‘I cried for days!’ Or ‘I felt my world had come to an end!’’

But, as Barbara with age-related macular degeneration (ARMD) in one group said when coming to terms with her loss, ‘I may not have good eyesight, but I realise I still have a good brain!’ In this succinct way Barbara is correct; there is indeed another life, another way of doing things and we hold other capacities besides vision.

The Range of Responses to Vision Loss

The following client responses from my discussion groups highlight the range of reactions often encountered.

‘I haven’t told my boyfriend or parents about my Lebers, I am too embarrassed. I just can’t bring myself to do it!’ (age 32, Lebers)⁵

‘I’m afraid to tell my partner how bad my sight is!’ (Age 45, Retinitis pigmentosa)

‘I was deflated, depressed, I didn’t know what the future would be and how fast my eyes would deteriorate.’ (age 40, glaucoma)

‘It was upsetting, I had a feeling, hoping it wasn’t true.’ (age 62, age-related macular degeneration, ARMD)

‘My family had a history of going blind with glaucoma, but I still couldn’t believe it was happening to me!’ (age 35, glaucoma)

‘When I woke up, I couldn’t see and thought what will I do now, I just didn’t know what to do.’ (age 64, stroke)

‘I feel I’ve lost my identity, my work and all things I knew how to do. I’m feeling angry, sad, what have I done to the world to deserve this?’ (age 46, diabetic retinopathy)

‘It was emotionally big, I got depressed, couldn’t watch TV and went to bed, pushed it all to one side and hoped it would get better.’ (age 67, ARMD)

‘I thought, Oh grrrr! Now I can’t drive!’ (age 72, ARMD)

‘Yes, It was devastating! I didn’t realise my eyes were so bad until I crashed into a train crossing.’ (age 68, glaucoma and ARMD)

‘Devastating, I thought I’d received my death certificate, I wanted to die, I thought my life had ended!’ (age 43, glaucoma)

Rather than admit disability, many people pretend nothing is wrong. When struggling on day by day gets too hard, they simply withdraw from social life as this appears to be the easiest option. As Gerrard from Victoria, aged 56 with retinitis pigmentosa said, ‘I don’t go out any more as I can’t see in dark venues and there’s no hope in picking up a girlfriend! What girl wants to date a person who cannot see? After all, who wants to admit they are disabled?’(See Dating in Chapter13.)

Until we can accept ourselves as now being different, much of our apprehensions about vision loss, apart from the need to re-skill ourselves and approach tasks differently, is based upon perceptions of what we think others might say or think about us, or the inadequacy arising from not seeing clearly. We may do things differently and feel that we are being judged as fumbling, inadequate, or eccentric. In her book, Blindness for Beginners, Maribel Steel, who has RP, writes, ‘There is no doubt that it does take a certain amount of courage to ignore the misguided attitudes you will come across, but what you receive in return for your boldness is good wishes from others who want to support, not judge you. Communicating your truth is liberating in so many ways.’⁶

Grief over vision loss, or reluctance to accept the loss and then tell others, is often not confined to a person directly affected; it extends to partners, families, friends and strangers. As one client reported, ‘I couldn’t tell my friends, but I later found out they knew something was wrong and they were compensating for this. I found out later that they didn’t know what to say, but they offered to pick me up and drive and I felt embarrassed about this!’ (age 35, retinal dystrophy).

Indifference and even appalling insensitivity can be commonplace though. One family member said, ‘You are going blind, get over it!’ In another discussion group, a female client reported that a stranger, on hearing that she was likely to pass on her inherited genetic vision loss to her unborn child, said to her, ‘It would have been kinder to abort the baby!’

In navigating this potent brew of complex issues, our feelings are often sublimated. We keep on carrying on with stoic fortitude, ‘I won’t let this beat me!’ This can be both good and bad. Good because, if coupled with anger, it can create determination, perseverance and a desire for action; bad because you might be withdrawing, denying or refusing support willingly offered by others. Or, failing to recognise that technology, re-skilling and another different life is possible.

In most instances, knowledge about availability of supporting services and accessible technology plays an essential role in transitioning to a state of mind we call ‘acceptance’: accepting our loss of capacity and moving on.

Psychologists now say that ‘the process of grieving may differ from one moment to another’,⁷ so there is no one-size-fits-all approach to understanding vision loss. Everyone’s needs are different. It is important to know that a fear of loss of sight can be overcome. Many, many totally blind people say after having lost their sight, ‘Life goes on, it’s different, but still rewarding.’ There is a life after vision loss, and as hard as this may be to believe, we must comprehend this fact if the gap of understanding between the sighted and vision impaired worlds are to be bridged.

Understanding Grief

All clients I met during my Facilitation either had, or were experiencing a sensation of loss and grief. Yet, very few understood the impact this had upon their daily life when these natural feelings were suppressed by a desire to ‘fight it,’ or ‘get over it,’ or ‘not complain.’ It is now accepted by psychologists that grief can lead to greater resilience, if not personal growth, and how we adapt shapes who we become. So, what is grief?

According to the Oxford Dictionary, grief is a feeling of great sadness, unaccountable sadness, intense sorrow.

To understand our pathway to acceptance of vision loss, it is important to comprehend what grief means. Grief is a natural response to loss expressed by sadness, melancholy, withdrawal and crying. It is the emotional feelings one encounters when something like our physical capacities, or someone we love, is taken away. Not being able to see the faces of loved ones, or having a child with vision loss (or other disability) may also create feelings of loss. (See Chapter 14, Parenting.)

Vision loss sometimes comes unexpectedly, with no prior family history, for example through accident. When this happens, shock, self-pity, blame or guilt may be experienced creating barriers to positive rehabilitation.

Feelings of self-pity, blame and guilt can be paralysing in some instances where vision loss is self-inflicted, such as in clients I met who took excessive amounts of quinine,⁸ or ignored early signs of diabetes, or in other cases caused by accident, as in one case where a man, playing with explosives, lost all his sight. Many clients with diabetes deeply regretted ignoring early signs and numerous doctors’ warnings. As with glaucoma, irreparable damage to the retina can be taking place without you being aware until it’s too late. I think many cannot comprehend that diseases that appear so innocuous in their early stages can cause something as dramatic as blindness.

While grief associated with sight loss can be complicated by mixed feelings which make it difficult to stop punishing ourselves, consultant psychiatrist Colin Murray Parkes says, ‘Loss is not necessarily harmful and can foster maturity and growth. Grief is a natural process and everyone grieves differently. It can be experienced differently by individuals and be life-changing but we can learn to re-integrate its emotions into our life.’⁹

The process of grieving may also differ according to differences in family attitudes, cultures, character and personality, and we may need to give ourselves permission to grieve in a way that may challenge our customs or beliefs. As psychologist, Associate Professor Christopher Hall Maps notes, ‘The focus of coping may differ from one moment to another, from one individual to another, and from one cultural group to another.’¹⁰

If we accept that there is no exact or correct time for grieving, ongoing sorrow, melancholy, sadness and regrets can take place at any time, leaving us feeling bewildered, out of control and isolated. We can become confused and more forgetful. Elin Williams, ¹¹ a young woman with RP, told the BBC, ‘Blindness and mental health will always cause confusion.’ At first. Ellen said, ‘I felt very lonely and I went through a period of suffering with anxiety and panic attacks as well.’ She added that she did not want to go into rooms full of people as this increased her anxiety, a view supported by Professor Ron McCallum in his book, Born at the Right Time ‘That the influx of too many sounds and influences can be hard to handle without the filtering, selective process of sight.’¹²

In discussing this adjustment to change, Dr Dean W. Tuttle and Naomi R. Tuttle, who have undertaken research on the impact of going blind, outline a clear adjustment process. Their co-authored book, Self-esteem and Adjusting with Blindness, discusses the process of responding to life’s demands and talk about seven stages experienced in developing a new sense of self in rebuilding self-esteem. These stages include trauma response, shock and denial, mourning and withdrawal, succumbing and depression, reassessment and reaffirmation, coping and mobilisation, moving finally to acceptance and regained self-esteem. Current psychological thinking suggests that stages of transition are not sequential and people can move back and forth between these stages. (See Chapter 7, The Psychology of Blindness and Trauma Impact.)

What I often found was that clients find it difficult to express their feelings. They often say, ‘No one understands my vision loss!’ In any event, it is usually quite difficult to explain what you can and cannot see. This is why peer group therapy is recognised as important in rehabilitation. I discuss such groups later in the book (See Chapter10.).

If participating in a group is not preferred, then writing about how we feel can also release pent-up tension. Elin Williams began to channel her feelings through her blog, which ‘helped massively’. Researcher and author Dr James W. Pennebaker, in his book, The Secret Life of Pronouns: What Our Words Say About Us, writes: ‘The mere act of translating emotional upheavals into words is consistently associated with improvements in physical and mental health … those who wrote about trauma evidenced improved physical health. Later studies found that emotional writing boosted immune function, reduced blood pressure and feelings of depression while elevating daily moods.’

Now, at this point let me deal immediately with a typical response — ‘I can’t write anymore because I can no longer see my computer!’ With modern adaptive text reading, or voice recognition technology, this response is untenable, so how about finding out how you can write by consulting service organisations or peer groups? It might be worth noting, that I have not been able to read text or a computer screen for 50 years and use what is called ‘text to speech’ software. (See also Chapter 18, Technology and Working in the Shed.)

Adjustment Disorder

In working closely over many years with a range of fully sighted service providers, a particular response I commonly heard worried me. Many sighted support staff commonly said that people with vision impairment were ‘depressed’. I thought this categorisation too simplistic as in my experience, people weren’t depressed, they just didn’t know what to do, what technology to ask for, or how to ask for support and so felt no hope that life could be improved. In talking to hundreds of clients, I have only found a mere handful of clients too depressed to consider how to change their lives. The simple fact that reading about what to do, or where to go, being impeded, also restricts capacity to adjust. In most cases, after a short talk highlighting possibilities on how they can keep reading and use technology, the client’s attitude became positive. For example, one woman from Queensland in despair over failing eyesight went to immediately download the Seeing AI app. She reported next day, ‘Oh, it’s fantastic, I’ve been going around my house reading everything again!’ She now leads a support group for people with vision loss.

Once vision loss occurs, the words ‘I can’t’ begin to emerge as a regular statement of presumed fact. This word is accompanied by heightened frustrations, anxiety, anger and a depressive state which of itself, may not mean clinical depression, but rather what is termed an ‘adjustment disorder’. This is an emotional low point, sadness or melancholy reached without hope for a cure, future or normality. For medical practitioners, the major concern with this disorder is the duration of this low point and whether therapy, rehabilitation or medication is required. This is also why peer group therapy can be so effective.

As Clinical Psychologist Dr Rob Gordon, psychiatrist