The psycho-social challenge of adapting to visual impairment

Introduction

As a counsellor who specializes in working with people who are or are becoming visually impaired, I commonly find that clients have great difficulty in agreeing to use a white cane or stick. This phenomenon is known sociologically as ‘passing,’ (Kusisto, 1998: p. 15) both by visually impaired people and the Disability Movement. It means trying not to be seen as having an impairment, and can be taken to dangerous lengths. There is obviously a deep-rooted need to appear ‘normal,’ however that may be defined. People commonly use the term ‘normal’ to describe the state of having no obvious disability, including that of sight loss. Fourie (2007: p. 224) says ‘individuals may also be threatened by the perceived sudden loss of normality in a society that seems to value the “normal”’. The desire to appear ‘normal’ seems to be common, if not universal. It entails not looking or behaving in ways that are recognizably different to the average or norm. Goffman’s work on Stigma (1963) explains how social relationships operate to discredit those who do not meet the stereotypical norm.

Goffman argues that stigma and stereotyping are linked, and condition our ‘unconscious expectations and norms, which act as unseen arbiters in all social situations’ (Goffman, 1963: p. 13–14). So when we become aware of a ‘discreditable’ difference, such as sight loss, the person may be reduced in our minds from whole and normal to a ‘tainted, discounted one’ (Goffman, 1963: p. 12). A central feature of stigmatization is non-acceptance by others, which entails a denial of respect and regard. White (2011) suggests that the discomfort we feel on encountering someone with an impairment is so universal it may be hard-wired. This seems a shocking notion, but I would argue it is sadly a common occurrence for visually impaired people. Many clients have told me how their sight loss meant friends suddenly disappeared; this is also experienced by people suffering bereavement, and may be a subconscious fear of contagion, along with embarrassment and helplessness at not knowing what to say.

The impact of ‘blind’

The word blind has very powerful negative connotations and stereotypes attached to it. These operate not only in social relationships but also in the world of employment. Hence the high rate (67%) of visually impaired people who are not in employment (e.g. Douglas et al., 2006). This was summarized most tellingly by tenBroek (1952: p. 4) when he said to the National Federation of the Blind in Tennessee:

Not their ability but their disability will hold the attention of employers…; and not their disability, but its false concomitant of inability will determine their fate. All will agree that they are more to be pitied than censured, but more to be censured than hired.

Strong words that still apply today. One of my clients, a man in his forties, collapsed suddenly, with an undiagnosed condition, and lost a good deal of his sight. When he was ready to return to work after 10 months recovering, his employer of 20 years refused to allow Access to Work to visit and assess his needs. (Access to Work is a government-funded body which supports ill and disabled people, and their employers, in returning to work. It offers advice and funding.) He was eventually made redundant.

The word blind has accompanying with it negative connotations. For example, after the first obvious meaning of lacking sight, the second is ‘lacking perception, awareness or judgement’ (Oxford English Dictionary (OED) on-line 2011), followed by ‘not controlled by reason’ and ‘not governed by purpose.’ Not to labour a point, there are many more negative associations. No wonder that according to a world-wide study by the Environics Poll (2008), vision loss is the most feared disability, and blindness and cancer are the two most feared health conditions.

Fear, pity and stigmatization of visual impairment are not just somewhere out in the atmosphere, they are within all of us to a degree, until we take the trouble to learn that they are subconsciously assumed stereotypes that we can correct. This is what Zaborowski (1997: p. 217) is talking about when she says that the therapeutic task is:

To assist the client in a journey away from the popular misconceptions about blindness to a more functional adaptive view that promotes motivation to learn skills and retain self-worth.

So when someone acquires sight loss in later life, never having had contact with visually impaired people or imagined it could happen to them, they have exactly the same unconscious assumptions, but now apply them to themselves. This is illustrated by a client who had macular disease, and told me that before her sight loss she used to help by taking others to what she called ‘the blind club.’ She had felt for these people in a pitying way, almost as if they were a race apart. Now she qualified as a member of this ‘discreditable’ group. At first this was terrible to her; she had only seen herself as giving to them, not considering she might gain something herself. When encouraged to try it as a member, she began to see the members as individuals, with varied qualities and interests, just like herself. She no longer defined them all by their disability.

Client illustration

I will further illustrate the powerful negative impact of the word blind by quoting parts of my work verbatim. Jean is a woman in her forties, who has RP (retinitis pigmentosa) and came to counselling when her sight deteriorated, which meant she really needed to start using a long cane. Like all the clients I have known, she was far from eager to be seen using the cane in public, although she had agreed to learn how to use it with the ROVI (Rehabilitation Officer Visual Impairment). Jean consented to my recording and using this dialogue, in the hope it would be useful to others on the sight loss journey.

Here Jean reveals her negative stereotypes of blindness, unaware, as is common, of all things that blind people can do. When the consultant used the old word blind instead of severely sight impaired, as part of the UK registration process, Jean became the stereotype she had in her mind.

Jean’s response of wanting to hide and not to go out is a common route to depression in my experience. Higher rates of depression in visually impaired people are confirmed by research such as that of Burmedi et al. (2002). If this happens there is an urgent need for counselling, so the person can understand what is happening and why, and can start to forge a route out of retreat and back into social contact.

The need for public education

One of the major challenges with sight loss is the need to educate others, as the onus falls on the visually impaired person, at a time when they are dealing with feelings of loss, maybe anger, anxiety and fear for the future. Lyons and Sullivan (1998: p. 143) identify this issue very clearly, saying ‘Communication issues surround who to tell, how to tell, how much to tell about symptoms, prognoses, or changes in performance… .’ Talking about oneself and one’s disability requires confidence and positive self-esteem. However we know that ‘the process of adjustment typically involves a drop in self-esteem’ (Lyons and Sullivan, 1998: p. 144). Because sight loss entails a re-learning of basic, taken-for-granted everyday tasks, it tends to make the person feel as if they are in child mode, and are incompetent and even stupid. People who have been speedy in their ways, like Jean, struggle with having to slow down, which generates feelings of frustration and anger. Negative responses from others, such as the couple in the supermarket, may just tip the balance towards retreat and depression. According to Burmedi et al. (2002) the prevalence rate of depression in elderly visually impaired people is 25 to 45 percent. This is at least twice as high as in older people with good vision.

The problem of blind being a generally internalized negative stereotype is also compounded by the other problem, which is that without carrying the dreaded cane, or using a guide dog, the public cannot perceive that someone has a visual problem. Jean experienced this when she inadvertently ‘jumped’ the queue at B&Q, and was shouted at by an irate man. Other clients have had accidents before deciding to ‘come out’. It may be the case of which is the lesser of two evils, until the visually impaired person can feel competent and confident in who they are. Christine, another client, refused to use a cane, but went out up her street with a puppy. A neighbour spoke to her and she told him she was visually impaired. He said he understood now; before he had thought she was ‘hoighty-toighty’ when she did not reply to his greeting! Her reward for coming out was a new friendship and better understanding. She is on a gradual path to being able to ‘own’ her disability without the shame it engendered in her previously.

Identity change

It seems clear from many examples that the identity or as I prefer to call it, label, of being visually impaired carries many negative stereotypes in the minds of the public at large, if they have no acquaintance with the reality of that state, and the achievements of many visually impaired people. Barnes (1996: p. 37) who has congenital cataract says his impairment caused him few real difficulties, ‘The problems I have encountered have all been socially created…’

So to adjust to a visual impairment is it necessary to adopt an identity as visually impaired, as Hayeems et al. (2005) posit? Or is it sufficient, as Zaborowski (1997: p. 216) proposes, to ‘make a cognitive shift that acknowledges that being blind can be compatible with remaining functionally independent’? I rather think the latter is what happens for most clients I have counselled. It is not easy to define personal identity. Identity seems to be about who you think you are, and how you think others see you. It is closely related to self-image, and therefore to self-esteem.

When diagnosed with an illness or disability, self-image, and thus self-esteem and confidence may well be lowered in the early stages. The degree to which this happens depends on the level of stigma and fear attached to the condition. A diagnosis of sight loss is still most feared, as it entails entering a stigmatized group, in addition to the public misconception that blind means seeing nothing at all.

Differing ways of adjusting to sight loss

My experience over the last 10 years of working with this client group would indicate that there is more than one way of adapting to sight loss successfully. This may involve joining clubs and organizations, and vey much orienting energy and emotional involvement to this sphere, which presumes at least a partial adoption of shared identity with others who are visually impaired.

Another route to adoption of identity may be found when people discover totally new meaning and purpose in developing a role in the world of visual impairment by working within it, often to help others. Several clients have achieved this. After a year of counselling, John went on to find work with his local association, organizing events for people with sight loss. Some have become ROVIs (Rehabilitation Officer for Visually Impaired) or counsellors for sight loss. Researchers such as Calhoun and Tedeschi (2006: p. 9) call this sort of development Post Traumatic Growth. They say in their preface that the notion of individuals changing in good ways as a result of trauma is not new. But the focus by scholars and clinicians on growth from struggle and crisis is fairly recent. Not everyone can achieve this, nor wishes to. But when positive life changes emerge from the experience of sight loss, it allows positive meaning to be attached to what at first seemed an entirely negative event. In these instances a very positive identity as visually impaired is clearly part of the process.

Many others with sight loss do not become involved in this way, but learn to carry on their lives much as before whilst adapting to doing things differently, slowing down in their actions, using technology and getting assistance to carry out their jobs and/or domestic roles. Jean is a good example of this. An argument could be made that when she assumed the stereotype of blindness, as a consequence of this she stopped doing most things. After talking and analysing how this happened, she changed her mind and rejected the stereotype. When I said to her ‘It’s a re-learning, isn’t it, how to do things to be safe, but to still do the things?’ she replied ‘Yes, definitely, but now I don’t mind accepting it. I think this is me, I like me, I don’t have a problem with me, and if you do, fair enough, that’s up to you.’ Here she is saying that negative reactions from others to her sight loss are quite rightly their problem, and no reflection on her. She is not saying she identifies as blind or severely sight impaired, because a few seconds before she also said that she told herself ‘you are not blind, you are not. The only difference between me and the next door neighbour is her sight is slightly better than mine.’ In other words Jean is a person who happens to have sight loss, but is not defined by it. It is only one part of her existence.

Conclusion

It seems to me that for some people sight loss is a large or major part of their identity, and of what they do, in a very positive way. For others it does not play such a large part, but they can in time reject the stereotype and confidently use any devices and assistance they need. My experience as a practitioner confirms Zaborowski’s proposition, that adjustment entails rejection of the stereotype and moving to a position of confidence, self-worth and a can-do attitude. I think this is what happened with Jean. But when we consider the stunning effect of diagnosis on Jean when the word blind was used, it would seem essential to offer a way to unpick the effects of internalizing this negative. The shortest route is probably by counselling.

The public need better awareness of positive role models, and better understanding of the varied impact of different sight conditions, to help them relinquish fear and stigmatization. A client of mine found one way of promoting this better understanding by going into schools with his guide dog and talking about sight loss. Whilst fear and stereotyping remain, people diagnosed with sight loss would benefit from counselling not just to help them adapt to low vision and different ways of doing things, but also to enable them to handle the negative social responses that come their way, and which they may well hold themselves, until they discover that they can be active and independent as well as visually impaired.