KNOWING OURSELVES

Many nurses believe that they treat everyone the same and/or they are not privileged or oppressed in any way. We challenge this position as we believe that all of us contribute to disparities within society and the healthcare system. If we start with the premise that we all use stigmatising processes and are all affected by them, then we can get somewhere with challenging them. We offer here some self-reflexive questions that can assist nurses to care effectively for people who are different from themselves, such as those who live with a chronic illness and/or disability. These questions have been informed by the work of Porter (1996), Maeve (1998), Smith (1999) and Giddings (2005a).

Self-reflexive approaches to nursing practice are grounded in respect and regard for clients. They help position nurses as client advocates and social activists by making visible stigmatising processes such as stereotyping, labelling and othering, and their outcomes—social isolation, powerlessness and health disparities. These processes and outcomes are complex and interlink to produce a society in which some people and groups within certain contexts are privileged and others are marginalised and discriminated against. Of course, how one views these processes depends on where one is standing. Those people who are privileged by belonging to a dominant cultural/social group, such as being male, white, heterosexual, middle-class and abled, may not be able to ‘see’ that just belonging to a mainstream group can advantage them in relation to others. Conversely, those people who are identified as belonging to a group that is marginalised within society may effectively internalise the dominant cultural attitudes and so believe them to be true (Giddings, 2005a); they have an acquired social consciousness or false consciousness so they self-fulfil or act out the stereotypical behaviour (Giddings, 2005b). For example, a person who is living with diabetes may self-label as ‘a diabetic’ or may accept a ‘sick role’ of unnecessary dependency.

Table 5.1 Definitions of stigmatising processes

In the broadest terms, we are arguing that people coming into the healthcare system, no matter what their difference, need to be culturally safe; that is, receive effective and safe nursing practice (Nursing Council of New Zealand, 2005; Wepa, 2005). Nurses need to not only be aware and sensitive to the effects of stigmatising processes within society and the healthcare system, but also have a social consciousness that enables action by developing strategies for implementing change—working with, not against (Giddings et al, 2007), naming not blaming, and deconstructing power relations rather than passively accepting the status quo (Giddings, 2005b).

DECONSTRUCTING (IDENTIFYING AND NAMING) SOCIETAL STIGMATISING PROCESSES

It was not uncommon a few years back to hear stigmatising or othering terms used to describe people who live with a chronic illness and/or disability. For example, people were described as being handicapped, crippled, retarded, sufferers, mongoloid or wheelchair-bound. They were often labelled by their condition, for example arthritic, diabetic, lunatic, asthmatic, spastic, quadriplegic or epileptic. Identifying such labelling is one of the first steps in challenging the processes of stigmatisation. It can assist in making stereotypes and related health disparities visible and open to critique. Nurses need to be aware, however, that many people living with a chronic illness and/or disability may wish to conceal and keep their condition secret in an attempt to pass as ‘normal’. These attempts, though a protective response to the marginalising and discriminatory practices within society, feed into their hidden nature and make them difficult to challenge. It is important to challenge stigmatising processes, however, as they not only have negative effects for the individual living with a chronic illness and/or disability, but also for their family, friends and community, and can even extend to those who care for them. Within nursing itself, for example, there are processes that marginalise and discriminate. Nursing educational programs often exclude people with disabilities (Carroll, 2004) and nurses living with a chronic illness and/or disability often report difficulties with maintaining employment and/or achieving promotion (Giddings, 1997; Wallis, 2004, 2006; Weiss, 2005).

In the following case study are common scenarios that can help you to explore the principles of nursing care that can guide your practice in relation to naming and challenging stigmatising processes while caring for and working with people who live with a chronic illness and/or disability.

WORK WITH CLIENTS IN CONTEXT

The stories of people who live with a chronic illness and/or disability may have some similarities, but each person’s journey is unique. Rather than generalising experiences with the risk of stereotyping, such as ‘the difficult arthritic in cubicle three’, nurses need to work within the context of the client’s everyday life.

CASE STUDY 5.1

John aged 45 years, lives with his partner Susan and their two children in a major city. Melanie works full-time as an accountant. Zara, aged 12 years, and Gerard, 16, attend the local high school. John, an architect, has not worked for the last two years. He was diagnosed with multiple sclerosis (MS) 15 years ago. The severity of his condition has necessitated the use of a walking stick and more recently a wheelchair and mobility scooter for activities outside the home. Susan has some understanding of the issues John faces as she has lived with diabetes (Type 1) since she was 16 years old.

PART 1

In his 20s, John played goalie at the local soccer club. Until recently John had coached a junior team, but as he was finding it increasingly difficult to access the clubrooms and facilities, he resigned. He put his name forward for the position of club treasurer. The position had been notoriously hard to fill and John knew he could do the work from home, thanks to computer and internet technology. Being treasurer, he reasoned, meant he could continue his contribution to the club. He withdrew his nomination, however, when it became clear that the committee required that he attend monthly meetings held at the clubrooms. When he asked if they would consider moving the meeting to a wheelchair-accessible venue his request was denied. For a few months John was not in contact with his soccer friends and he missed his chats with them at the club bar. At the recent annual general meeting no nominations were received for treasurer. On the incoming committee, however, was a nurse who, on hearing of John’s earlier nomination, challenged the processes that excluded him from the position. She successfully argued that there were numerous options, including the treasurer’s work being done electronically and communicated via emails, moving the meeting to the local community centre, which was accessible or, in the longer term, making changes to the clubrooms to ensure accessibility for everyone.

PART 2

John and Susan frequently go to the movies, often enjoying a coffee or meal before the show. Although the local theatre is accessible for wheelchairs, the cafes and restaurants in the area have narrow doorways and often steps. Once making it into a cafe John then has to negotiate his wheelchair to a table, often a difficult task. Recently on Susan’s birthday when they were ordering a coffee, the person behind the counter looked down at John then turned to Susan and asked, ‘What type of coffee does he want?’

Susan replied, ‘You can ask him.’

The young woman leaned over the counter and talking slowly and loudly asked, ‘What—type—of—coffee—do—you—want?’

John replied, ‘I am not deaf or brainless. I would like a double shot long black with two sugars please, and my partner will have a trim latte, no sugar. And while we are at it, we will have two pieces of that delicious-looking apple cake, thanks.’

While they were consuming the coffee and cake, John chuckled and said, ‘What if the practice nurse catches you eating that cake?’

Susan laughed and replied, ‘She would be shocked, I’m sure. She just doesn’t seem to understand that sometimes one just has to do it.’

Later John needed to go to the toilet. The cafe’s toilet facilities were outside, down some steps and near the storeroom. Such inaccessibility necessitated that he wait until they reached the movie theatre. Although the theatre has two wheelchair-accessible toilets they are both situated in the women’s and men’s toilet areas respectively. As John requires assistance with toileting, no matter which they choose they often receive disapproving looks from other patrons. John reflects on the irony posed by such situations as he, in his other life, was an architect.

PART 3

John had elective surgery for an abdominal hernia and was admitted to a four-bed room in a surgical unit. The morning following surgery when the nurse finished checking his wound, she stressed to him the importance of walking soon after surgery and instructed him to walk to the end of the ward and back. Some time later she returned and asked if he had been for his walk. John shook his head but before he could explain, the nurse loudly remarked, ‘I don’t know why some people can’t help themselves’, and left the room.

Billy in the neighbouring bed chortled, ‘She got you there, mate’.

John responded, ‘Actually I live with multiple sclerosis and would have been lucky to make it to the door prior to my surgery, let alone now!’

Silence hung between them.

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