change of ethics can lead to Warts language.We can chanche the label and attitudes.Care labels we need give targeting benefits and support.
Why is it important to explore the way language is used? Two reasons were suggested in the previous units. Definitions are important so that services and support can be targeted to where they are most needed. And words carry several meanings.
One student included as an example in her answers to the activity about what care means:
‘In care’ means stigma for children and young people.
This did not fit either of the definitions - care is work or care is love. So, where does it fit? Being ‘in care’ is often assumed to be linked to being from a ‘problem family’ or being a ‘problem child’.
So, although intervention by services to rescue the child is meant to be a good thing, children who have been in care often feel they have been given a label which says to the outside world ‘this child does not come from a good home, this child is probably odd’.
It can carry a negative message about them, in other words a stigma. If you know someone has been ‘in care’, you might be curious to know more or you might be prejudiced against them.
In some circumstances, therefore, care can be a label just like the term ‘carer’.
Take the case of Lynne Durrant. Lynne was labelled as someone in need of care. As a child, at the age of eight in 1956, she was certified as a ‘mental defective’. This meant that two doctors were prepared to sign a form to say she was uneducable, unable to benefit from schooling, and therefore should be excluded from school.
She went instead to an occupation center run by the local authority for children who had been labelled as ‘mentally defective’.
The label defined Lynne as a particular sort of person, someone in need of care because it was thought that she would never be able to fend for herself as an independent adult.
That label shaped Lynne's life to a great extent. She was excluded from school, never learnt to read or write, and got no educational qualifications. Little was expected of her. She did not try to get a job when she left the occupation center.
Instead she went to an adult training center, another local authority service for people who had been labelled mental defective. Lynne's label defined her as eligible for special care provision. It both opened doors (to a sheltered life in the adult training center and to certain financial benefits) and closed them (no job, no home of her own, no mature, long-term sexual relationship). Like ‘carer’, ‘mental defective’ was not a label Lynne applied to herself.
Times changed, and along with them the label that was applied to Lynne. She went through periods of being labelled ‘sub-normal’, then ‘mentally handicapped’, and finally in 1992, she was introduced as ‘a woman with learning disabilities’.
In 35 years the official label applied to Lynne, and people like her, had changed at least four times, and that leaves aside the unofficial labels she was given by others - unflattering names like ‘dumbo’, ‘spastic’, ‘mental’, ‘thicko’.
However, it wasn't just a matter of the label changing. Life changed for Lynne, too. At the time you met her in the drama she had left the training center and had a paid job alongside people who were not labelled.
Although she still aspired to a home of her own, she had escaped at least some of the negative expectations that her label carried. In fact, she had acquired a new label - ‘worker’ - one which she was prepared to own.
Words like ‘mental defective’ are also linked with images.
Together, the words and the images make a powerful impact.
Look at the photographs of ‘mental defectives’ on the following pages. They are taken from a standard textbook entitled Mental Deficiency published in 1947 (Tredgold, 1947).
What sort of ‘care’ do you think these people require?
Answer A, B, or C to match each photograph to one of the care needs listed below.
A. Loving care of a family or family type environment.
B. A form of care preventing contact with the public.
C. Medical care and a good deal of looking after.
• Photograph A is apparently taken in a hospital. The subject is naked, contorted and helpless. The photo suggests that he needs medical care to remedy the effects of the quadriplegia, and probably a good deal of looking after as he is apparently helpless.
• The man in photograph B is labelled as an ‘epileptic ament’. He may be a nice chap, but he looks decidedly alarming, and the label is, to a contemporary reader, both mystifying and alienating. Maybe he needs a form of care which would stop him coming into contact with the public?
• The children in photograph C are also in some kind of institution. They are wearing uniforms. At first sight they look like orphans, and would benefit from loving care in a family or family type environment, but the caption labels them as ‘Mongols’, not ordinary children.
Together, the term ‘mental defective’ and the images appear to stress difference. The message is that these people are abnormal, not like us.
Of course, you would want to know more about all these individuals before making any pronouncements. But the point of the activity is to show that knowledge that they are mental defectives, combined with the images, tends to lead to a particular set of assumptions about who they are and what sort of care they might need
Nowadays, as explained earlier, the term ‘person with learning disabilities’ has largely superseded the earlier labels - mental defectives, mentally handicapped, sub-normal.
Along with the changing names come changing ideas about the care needs of people so labelled.
The following photographs conjure up very different images.
Sara is a woman with learning disabilities but, unlike the people in the previous set of photographs, she is portrayed as active and competent, doing the ironing.
Although she is obviously disabled, Shirley is in her own home, an ordinary house, not an institution. She has aids to help her with daily living - a wheelchair and a communication device on the arm of the wheelchair. Probably she will need some special support, especially if the built environment is not wheelchair-accessible. But she looks far from being someone who needs either medical care or looking after.
The message from these words and images taken together emphasises what these people have in common with other people, what is shared, not what is different. The photographs show contrasting images of people who are categorized as being in need of care.
The mental defective label is linked to a highly medicalised form of care. These people, the photographs tell us, are very different from normal human beings. They need specialized medical treatment.
The learning disability label linked with the more positive images presented here is associated with a rather different type of care - care as a helping hand with life, for people who are not so very different from the rest of humanity.
The changing images of people with learning disabilities shown in the photographs are not conclusive proof that changing labels brings changed realities for people like Lynne. But they do suggest that language both shapes attitudes and reflects changes in attitude.
Another group of people whose labels have changed over the past century is people who experience mental illness.
Make a list of labels for them that you can remember and then consider what the name changes say about them.
The broad range of terms has changed from ‘lunatic’ in nineteenth-century legislation through ‘insane’ or ‘mad’ to ‘mentally ill’ to ‘people with mental illness’ or ‘people with mental health problems’.
Particular medical conditions also give rise to labels - a ‘schizophrenic’, a ‘manic depressive’, a ‘psychopath’. What is noticeable is that the range of terms moves from ‘lunatic’ which completely defines a person according to their mental state, rather like ‘mental defective’, to labels which put ‘people’ first and the condition second - like ‘people with learning disabilities’ or ‘people with mental health problems’.
The message is that they are not only ‘a problem’, they are also people. It is considered more humane to make the label secondary to what the person has in common with the rest of humanity.
Some people who have experienced care in mental health services go further than this. Founded in 1986, Survivors Speak Out is an organization composed of ‘users’ of mental health services. They argue for the term ‘survivor’ because it switches the location of the problem from the person to the operation of the health and social care system itself.
A few years from now, there will undoubtedly be new labels for people with learning disabilities and mental health problems, and other groups who are seen to need care. This is because new labels which are intended to de-stigmatize get contaminated by some of the negative attitudes attached to the condition they are describing. Thus ‘sub-normal’, introduced to replace ‘mental defective’ in the Mental Health Act 1959, is now seen as a term of abuse.
You have seen that the words used to label people who are seen as needing care can stigmatize them.
By picking them out as unlike ‘normal’ people, they can feel belittled, de-humanized and deprived of respect. But it is not just the labels like ‘mentally handicapped’, ‘lunatic’ or ‘mentally ill’ that are at issue.
"The terminology used in this area is important because it colors non disabled people's attitudes to disabled people and their needs … ‘Care’ is being rejected by growing numbers of disabled people because it … relates their needs to a society which treats them with compassion rather than to a society which respects their civil rights". (Kestenbaum, 1996, p. 6)
In other words, some disabled people are arguing that to be seen as a person in need of care is demeaning. It suggests dependence rather than interdependence, inequality rather than equality, charity not rights.
They are saying that ideas about disabled people being citizens with basic rights, rather than pitiful objects of charity, need to be reflected in the language we use
‘Care’ is a word that is not going to be abandoned overnight because some disabled people dislike it.
It is enshrined in legislation, such as the National Health Service and Community Care Act 1990, the Carers (Recognition and Services) Act 1995, and in high profile government policy like the National Strategy for Carers. And it is hard to think of another word which does not have problems of its own.
For study purposes, we do need a definition of care, just as we needed a definition of informal carer. So we propose that in the context of health and social care we define care as:
"something that is needed when people cannot function in daily life without the practical help of others."
Care is associated both with medical care and with support to people in living normal lives.
And it is, to some people, a term which, when applied to them, is belittling and demeaning.
It is a word we have to use, for lack of good alternatives. But it is a word to use with care!
• Care is both love and work - caring about and caring for. Sometimes the two go together, but this is not always the case.
• Labeling people as being in categories who need care is a way of targeting benefits and support: it can also lead to restricted opportunities and negative attitudes.
• Changing labels can help to change attitudes; and changing attitudes give rise to changes in language.
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