chapter 13 - UdflflKEUUH 11:12 Hdb4b31342 HUMQN HtHUiUtH...

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Unformatted text preview: UdflflKEUUH 11:12 Hdb4b31342 HUMQN HtHUiUtH Q“ 13 Policy, provision and practice: care or control? What is ‘care’? this chapter examines the contested nature of the concept of 'care'. Although :he word ’care’ may be linked to warmth, closeness and love, it has also been associated with control, power and oppression. In the first section of this :hapter the many meanings of ’care’ and how these meanings are reflected in whey and practice will be explored. In the second section, the views and crij Liques of disabled people concerning “care” will be examined. The chapter will :onclude with a discussion of Self-advocacy and will focus on MK SUN, which 5 a peer advocacy and campaigning group of mental health service users and survivors. ’Care’ is a multifaceted concept with an ambiguous set of meanings (Hugman 1991). The everyday meaning of care, however, Suggests coneern and consideration for others. Caring for others and being cared for in return 5 important, indeed essential, for most of us. We feel happier and more ful- illed when others care about how we feel and what we achieve. Care can be expressed .in many ways, by giving practical assistance, advice, emotional sup- aort, social support, physical intimacy and prayer. Caring is frequently recip~ rocal and may serve to strengthen relationships by increasing rewards, Jetween say, close relatives or friends. his not, however, always twoaway, sarticularly as we may care about people we have never met, or those who save yet to be born, Even when reciprocity of care is not present, for. example when caring for young children or a spouse with advanced Alzheimer’s dis- ease, experiences of providing and receiving care can still be valued. Caring, .s, then, ostensibly, a process of meeting people’s needs, and concern for the welfare of others, . ' ‘ Despite these positive aspects, the notion of care carries negative meanings for many'people and has been criticized by social scientists, feministsand -:hose in receipt of care. Most carers are women and caring, as well as being Ffifit U2511 lfltla’l‘jfle’lfilfitl 11:12 Hdb4btlltl42 HLIMll'uN til-.H'U'ililzti Hills“: lil'cla'rli 142 Poliqr, provrst'oh and practice devalued as a form of labour, is frequently seen as being a ’natural’ ponent of the female character (Davies 1999). This idea has been strong] challenged by feminists. Brechin (2000) states: ‘ In Caring, like mother love, risks being seen uncritically as warm, wonderé ful and quite unproblernatic — and indeed. like mother lovc. is assumed to be richly rewarding and empowering for both parties . . . for some people warmth and support may be welcome. for others a more detached,- form of help and advice may be what is wanted, with ‘care’ seen as intro-.3 sive and inappropriate. ‘ (erechin 2000: 141) The cosy image of care as synonymous with love can serve to mask: the con trol that operates in many relationships where one person is substantially dependent on another. i’rlestley (1999) contends that care within families free quently leads to possession and control, and Johnson (1998} makes the poi-‘an that within social policy care is usually linked to contrul. supervision and pro tection. The social worker, for example, may, within an ideology of care, supervise people whose parenting skills are deemed to be inadequate, and young offenders may, at one and the same time, be subjeCt to care, control, surveillance and protection. Talking of young people in residential care Ward (1997) states: ' For many of these young people, important decisions about their present and future life are lilter to have been taken without their feeling prop- ‘ erly involved and consulted . . . this general sense of powerlessness may I. i add further to a sense which these young people have . . . of disaffection and alienation from adult society and its values. ‘ (Ward 1997; 233) Physical, sexual and emotional abuse within contexts, which claim to be = ‘ caring (for example families, childrens homes and schools), is common with the most notorious cases appearing in the national newspapers. McKnight (1995) analyses care in terms of the needs of professionals and the economy. He explains that as Britain's manufacturing industries have declined, the country has become increasingly dependent for its wealth on I “Q service provision which has resulted in categories of people being ’created’ ‘ " who are deemed to be in need of care. He states: ’More and more conditions of human beings are being converted into problems in order to provide jobs for people who are forted to derive their income by purporting to deliver a service' (McKnight 1995: 29). He cites the medicalization of bereavement. ' old age, ‘hyperactivity' in children and childbirth as examples of this tend- I ency. McKnight (1995: 39) goes on to say that the word care, “masks the political interests of services .. . behind that mask is simply the servicer, his systems, techniques and technologies — a busineSs in need, of markets, an economy seelring new growth potential, professionals in need of an incOme'. ldtli’l‘jfle’lfilfitl 11:12 Hdb4htlltl42 HLIMtl'uN til-.H'U'ildlzti Hills“: lilfili'rll Policy, provision and pram're: care or control? 14.13- According to Adams et al. (1998} to be in receipt of care on a long-rem. I 3am Equams with a very low social status. This, however,- depends on the :ontext in which the care is provided. As Shakespeare (2000) states: if you describe a family who live in segregated accommodation, are looked after and have‘their meals Cooked for them . . . have people to drive them around and are lilcely to be. stated at wherever they go. it might be imagined you were talking about a very dependent type of person. Yet you would be describing the British Royal Family. ‘ (Shakespeare 2000: 10) Care’ services are generally Stigmatized only if the person concerned is .mable to pay for them or if they are heavily subsidized When services are surchased they are usually thought of as ‘support‘ or “assistance’ rather than care’ (Brechin 1998). There is, for example, no shame or stigma attached to employing a cleaner, a gardener or a nanny or being pampered at a health :lub; indeed such assets and activities may serve as perverful status symbols. Similarly, having numerous servants was a sign of wealth and influence in the tinctccnth and early twentieth Centuries. The meaning of care and who is deemed to require it varies over time and icross cultures. Childhood. as conceived in western society today, for ' example. was consnucted only in the late nineteenth century. This came about with compulsory education and legislation to Control child labour. Until hen, rather than being the recipients of care, working-class children were sxpected to work, obey and contribute to the economic welfare of their iamilies (McCoy 1993). Thislsituation still remains in many majority world :ountries today (Hewitt and Smyth 2000) where young children may also be - enrolled in military service (Allen 2000). . . In western society children have. over the course of the twentieth century, seen viewed as needing more and more care and protection. The Children 1nd Young Person’s Act 1969. for example, stipulated that children whohad iffended were in need of care rather than punishment and the Children Act 1989 gave children greater rights under the law and more voice in what hap- iened in them in, for example, residential care. Such changes in philosophy within health and social care are reflected in anguage. During the eighteenth and early nineteenth centuries, for example, how in. charge of mentally ill people were called. ‘lceepers’ rather than carers’, which reflected their role in controlling and restricting the people in hair charge, The term ’attendant’ became popular in the second half of the nineteenth century and by the end of the century workers were referred to as iurses (Nolan 1993) which reflected the increasing medicalization of mental llness. , ThC COHEN of can: has fCflturEd in legislation. for many decades. Children, Tor example, were ‘put in carc‘ and people with mental health problems required 'after care'. In the NHS and Community Care Act 1990 the concept . . . . . . ll lfltlr’l‘jr'r'e’lfilfitl 11:12 Hdb4btllcl4z.’ HLIMil'rN thUiLtb l-‘ii'rlsil: that” 144 Policy provision Malpractice of care was substantially changed reflecting a market philosophy. Johnson (1993} explains that recent developments in state policy as a whole has reconceptualised care as a commodity for which people can be assessed and deemed eligible. It can be ordered, planned. managed, purchased. charged for, provided in the form of various services and marketed. ‘ (Johnson 1998: 152) One way in which the concept of care has been broken down is the division 5 hetween ‘caring for' (labour) and ‘caring about“ (love) (Hugnran 1991), ’Carin‘g for' refers to the practical activities of caring (for example dressing, ‘ bathing, cooking and cleaning} whereas ’earing about“ refers to the emotional ' "' aspects of caring (for example listening, comforting and explaining). Shake speare {2000: ix) states that “'care” is a word which is value-laden, contested and confused. particularly in the way it combines an emotional component and a description of basic human services.” In reality ‘caring for' and ’caring about” frequently occur together and the type of care Which is appropriate depends on the person and the situation. “Actions may speak louder than words’ especially during times of acute illness or other crises. In addition many people express love and affection primarily by doing practical things for others. . The importance of negotiating with the person in need of support and giving that person control of their life is now recognized as a vital component of helping relationships. Talking of older people in residential care Peace (1998) states: For people who need the support of others to make real choices over how they live their lives. the staff need to be both enablers and doers. with the ‘ balance set through discussion. It is the imbalance of power of staff over residents which can tip what may be experienced as residential living into institutional care (or control?). (Peace 1998: 119) People from ethnic minorities have been particularly neglected by health and social services as they have been expected to accept care which does not take their needs-into account (Ahmad 2000). The appropriateness of help arid support will alvvays be determined by the individual and their encomstances. Care can be both suitable and highly valued. Talking of their daughter's care in a hospice. for example, Zorza and Zorta (1993) state: Iler happiness was clearly apparent. She had no guilt about being help- less and dependent on others. She had always loved to give, but she seemed at last to accept that she could now only receive . . . Her needs were fulfilled Without question and without resentment. . ' I (Emma and Zorza 1993: 230i UdflflKEUUH 11:12 Hdb4b31342 Policy, provision and pracrz‘ce: (are or cam-ml? 145.- , ‘ Questions for discussion 1 Think of a time when you needed care {either physical or emotional) from another person. What Was your experience of this? 2 How did the other person’s behaviour contribute to your feelings about receiving care? 3 Does care inevitably lead to control? Do disabled people need ‘care’? Disabled people often feel stifled and oppressed by the care that they are given. Maciarlane (1996: 13) states: “Many disabled people will define the care they have received as being oppressive, often of a custodial nature and prOVided in a controlled wayl' Furthermore there is usually little if any con- trol over Who proVides the care or the amount that is received (Oliver 1996b). Disabled people frequently find that others are taking responsibility for them, ovenprotectlng them. controlling themf abusing them and thwarting their autonomy. Wood (1991) points out that disabled people have never asked for care and Morris {1998) statesf ‘ In the context of the economic inequality which accompanies significant physical impairment in industrial societies . .. the need for personal assistance has been translated into a need for ‘care’ in the sense of a need to be looked after. Once personal assistance is seen as ‘care' then the 'carer’ whether a paid worker or an unpaid relative or friend, becomes the person in charge, the person in control. (Morris 1998: 167) Walrnslev {1996) found that if adults with learning difficulties lived with their Parents the relationship tended to be one of dependency or ridden with con- flict. If the disabled person moved away, however. the relationship was more likely to be supportive. ‘ Receiving help which is excessively refined and ’professionalized’ can also feel stilling and oppressive to some disabled people. Louise, a blind woman who we interviewed, explained how she felt as an employee of the Royal National Institute for the Blind (RNIB): People used to try out their new skills on you. I’d never heard of ’sighted guide skills” before I went to RNIB and people were all into trying it out on you, guiding you in the right way, and telling you the right thing w it all made me feel blind in a sense. Usually people do it fairly naturally or you tell them what to do. It made me feel very awkward and different and dependent. Disabled people frequently prefer to train their own assistants rather than receiving professional 'care' (Morris 1993h). HUMQN HtHUlUtH It Ffifit Ubfll ld'clr’l‘jfle’lfilfitl 11:12 H'clb4btll'cl42 HLIMtl'tN til-.H'o'ililzti l-‘li'tlsil: lil Nil. Md Policy, provision and practice Disabled people from ethnic minorities have pointed out that the cam offered to them by health and social services is frequently inappropriate. iuac. ccssible, culturally insensitive and racist (Ahmad 2000; Evans and Ramon 2001). Vernon (1994) states that providers often assume that black families perceive it as their duty to care for their disabled relatives. It is also assumed by white professionals that black. disabled people. will be sufficiently taken care of by their eXtendc-d family networlc . . . they may have to rely on their families to provide the care because of the inappropriateness of other forms of care to their needs, (Vernon 1994: 113) In recent years, and particularly since the passing of the NHS and Community Care Acr 1990 with its emphasis on “care in the community', feminists have campaigned for the rights of carers. People in receipt of care have, however, been ignored in these arguments leading disabled feminists. such as Jenny Morris, to regard the debate as disablist. Feminist agendas have viewed d15- abled people as dependent and helpless and have therefore focused on “the burden of care’. In so doing they have ignored the experiences of disabled people and coiluded with prejudiced and discriminatory attitudes and behav- iour (Morris 1998). Disabled feminists and their allies have also taken issue with the assump- tion that disabled people are never carers themselves (‘Walrnsley 1993; Morris 1993). Many dlSabled people who need some assistance are responsible for the care of children (Wates and Jade 1999) and other relatives (Walmsley 199.3) or they worlr within the 'caring’ professions (French 200i). Even if this is not the case, care is often reciprocal as Richardson (1959), talking about her adult son with Down's syndrome, explains: You are at war all the time . . . there is the emotional side of you which loves your child dearly and you don't want to part with him, there is the other side, common sense, which says now is the time . . . But there's a selfish side too, can I manage on my own? Am I going to be lonely . . . And financially, I had more for Martin than my pension now. (Richardson 1989: 9) Disabled feminists have also been critical of the ways in which child carers have been portrayed without any regard for the disabled adults who need their assistance or the way in which society is constructed to create a situation where children are needed as carers (Keith and Morris 1995). It is important never to be complacent about the care that disabled people receive. The history of residential care for disabled people is very bleak with numerous accounts of neglect and physical; emotional and sexual abuse. Stella recalled the time she spent in a residential school for visually impaired girls. during the 19605: Even as oippers we were made to stand facing the wall for hours at a time. Quite regularly we would get the ruler across the legs really hard. There might be no sweets for weeks, or we. Were sent to bed Without tea. UdflflKEUUH 11:12 Hdb4b31342 HUMQN HtHUiUtH Policy. provision and practice: care or commie ,. i Quite often privileges like playtime Were misSed, instead We would have to stand in the corner very straight. We often got stopped from matings, I remember being stopped from a Christmas party, we stood from half past two until six o’clock facing the wall . . . We were matched out in front of i ' the visitors and for tea we had cheese and watercress while all the other children had fancy cakes. The thing i did to deserve it was knocking the plants over in the playroom when I was running around. Ijust didn’t see them but that wouldn’t have been accepted, I was thought to be careless and naughty . . . It's vividly in my mind to this day. I (quoted in French 1996: 30) Many other accounts of austerity and abuse of children and adults in resi- dential care have been documented often by disabled people themselves; Potts and Fido (1991} have written a book basecl on interviews with people Who spent many years in a ‘mental deficiency" institution. Margaret (admit- ted in 1951) who was interviewed said: Ii you were bursting to go somewhere and you wet yourself, you know like me, you got punished. Say you were in a wheelchair and you couldn’t ask to tell them, you still got punished . . .couldtt't go out. couldn't see your visitors . . . Shall Itell you Something else, if you leave your food, you know what they used to do? If you didn’t eat your dinner . . . leave it for your tea. And if you didn’t eat it fur your tea, you had it for your supper, and if you didn’t eat it for your supper you had it for your next meal. It’s truel (quoted in Potts and Fido 1991: 59) Mary Baker (1991) has written an account of the time she spent at the Halli- wick School for Crippled Girls during the 1930s. She recalled her first day: The nurse stripped rne naked and cut my hair short. She couldn't have eut it arty shorter if she tried. The sides were trimmed above my ears and I was given a fringe. The next part of my welcome was humiliating and degrading. My hair and my body was completely covered, sprinkled all over, with louse powder . . . I was being deloused but it made me feel dirty . . . The nurse told me there was nothing to cry about. . . Rules were rules and I had to be deloused. - (Baker 1991: 37') Many other practices, which are undertaken in the name of ‘care’, have been identified as abusive by disabled people. These include medical practices (such as excesaive physiotherapy), educational practices (such as preventing deaf children from using sign language) and attempts to ‘normalize’ disabled children by both their parents and professionals (see Chapters 6 and 12). Westcott and Cross (1996) have documented many recent reports of abuse against disabled children both at home and in institutions; Cross, who is her- self disabled, has written 'a book for carers and parents which analyses abuse and aims to prevent it (Cross 19.98). They both provide considerable evidence that the abuse of disabled children is more prevalent than the abuse oi non~ disabled children. Ffifit Uflfll ldtli’l‘jfle’lfilfitl 11:12 ‘:|';ll:i4l:ttli;l4.«_’ HLIMll'tN thUiLtb ‘ l-‘ti'tlstl: UHF]. 143 Policy, mansion and practice Since the development of the disabled people's movement, disabled peopk. have developed a network of Centres for Independent Living which provide ‘ i assistance on their terms (see Chapter 12) and have secured a system of “direct Iii-j . payments’ whereby they can purchase their own assistance rather than tely- if; mg on what is offered by professionals (see Chapter 7}. " Questions for discussion 1 Do disabled people ever need ‘care’? 2 Do the critiques of ’care’ by disabled people undermine the role of 'carers'? . 3 How, if at all, can carers promote the interests of disabled people? An alternative to 'care’ Self-advocacy means to speak out either individually or collectively and with or without support. It involves being assertive. standing up for one's rights, expressing one's needs and getting things done (McNally 1997). Self-advo- cacy groups work collectively to bring about change and to sUpport and assist each member. They enable people to develop confidence and self-esteem and to learn valuable skills such as decision making (C—ornm I999). Self-advocacy has grown during the 19805 and 19905 as many marginalized groups, includ- ing people with learning difficulties and users and survivors of the mental health system, begin to speak out. ‘ Advocacy, in contrast, involves a person speaking on behalf of another. In reality, however, adv0cacy and self-advocacy can be difficult to distinguish and may coexist. The goal of the advocate may, for example, be to enable the person represented to become a self-advocate (McNally 1997). Furthennore the advocate may be somebody who has gone through similar experiences. In this case the person is referred to as a peer advoCate. Atkinson {1999: 5) states that the central thesis of advocacy and self-advocacy is that ’people’s views matter and their voices should be heard.” Collective self-advocacy has grown into a social movement which has enabled marginalized people, such as those with learning difficulties, to influ- ence policv and practice. Selbadvocacy has greatly expanded since the mid- 19505 and has been assisted by legislation such as the Children Act 1989 and the NHS and Community Care Act 1990 which compel professionals to con- sult the users of their services. An example of a self-advocacy organization is Survivors Speak Out, which is a network of groups of mental health system I Survivors (Barnes and Bowl 2000). The organization was formed at a MIND - conference in 1935 and the first conference of Survivors Speak Out, which took place in 1987, produced a Charter of Needs and Demands. Although self~advocacy as a respected activity has only recently been recog nized. it would be a mistake to imagine that marginalized people in the past were passive and silent. Talking of people labelled ’mad', Campbell (1996: UdflflKEUUH 11:12 Hdb4b31342 Polity, provision and practice: can: or control? 149 218) states that ‘there has always been protest by mad persons at their nega- tive designation in the eyes of society and at the systems societies have set up to deal with them.’ Early organizations such as the British Deaf Association (founded in 1390) and the National League of the Blind (founded in 1898) also stood up for their rights as disabled people. Tit-id Williams recalled taking part in a march in the 19205 from Sheffield to Tendon, organized by the National League of the Blind, to protest against low wages and poor working conditions: There was more or less a national uprising. The whole of England and the whole of Scotland decided to have a march to London . . . They arrived in Sheffield and all our workshops joined them and we marched down to London . . . we stood in Trafalgar Square and shouted for What impmves merits we wanted. We sent a deputation of shop stewards into parliament and I might add they got nowhere at all. but it at least awakened people to our conditions. {quoted in Humphries and Gordon 1992: ll7—l B) MK SUN, which stands for Milton Keynes Survivors and Users Network, is a peer advocacy group where people who are experiencing or have experienced mental distress help each other. There is also a campaigning element to the organization where, for example, people are kept informed of changes in legislation. Advocates and campaigners visit ’drop-in’ centres and mental health clubs to give information and offer assistance. 1 (SF) met the people at MK SUN in 2000 when I was involved in melting a video for an Open Uni- versity coursaThe quotations below are taken from that video (The Open University 2002). Karen Deighton, who is a peer advocate and the advocacy coordinator, explained the work and philosophy of MK SUN: MK SUN offers a peer advocacy service, peers meaning that we’re also u$ers or survivors of the mental health system, We’ve actually been through the system so we know what we’re talking about. The way that MK SUN Advocacy works is that we accept people’s reality. If that's how they see life, that's where we go from. We don’t judge them. Part of the role of the peer advocates is to accompany people to meetings. for example to see doctors or social workers, to help them get the most outof the services on offer and to ensure that their voices are heard. Patti. AISOp explained his role as the campaign coordinator of MK SUN: At the drop-ins I can give the service users access to all the information. . . . Only by raising the awareness of the individual can we hope to reach a point where mental health will be out in the open, not locked behind closed doors. He also pointed out that, asweli as being an advocacy and campaigning organization, there is a strong social side to MK SUN: The ’drop-ins' are all friendly places. Evei‘ybod'y’s in the same boat and Working together and it’s nice for people to have friends. It's like an HUMQN HtHUlU t5 mm Ffifit 1U511 lfl'cli’l‘jflc’lfilfitl 11:12 Hdb4btll'cl42 HLIMi'l'iN til-.H'Uililz‘d 150 Policy, provision! and [:l'i‘czcz‘r'ce extended fatnin that some of us lose when we become ill. When people become ill they lose an awful lot of their sell-esteem. You go through the system and you’re told what to do. when to get up, when to go to bed etci MK SUN is a truly democratic organization. Questions for discussion 1 Have you ever received help to speak up for yourself? How did you find the experience? 2 Why has Self-advocacy become so prevalent in recent years? 3 Is self-advocacy a more appropriate form of assistance than that pro- vided by statutory services? Debate activity Debate the proposition: Caring for disabled people inevitably leads to control. The following quorations may provide you with a Starting point: l'd say we don't want to be cared for at all. I would say that we want to be facilitated, supported and empowered. Care to me has connotations of custody and lack of control and of looking after ‘ somebody who is sick and getting worse . . . lwould say caring and care in the community is about control — maintaining us in a cer- tain position — and it's about seeing disabled people as people with individual problems. It's not empowering at all. (Campbell quoted in Williams W97: '94) They do everything for me, keep me clean . . . WE cope between us . . . You couldn’t ask any more. I’ve never lived in a hotel, I would- at know what it's like, but you couldn't get more attention by just ringng a bell. (Older disabled woman talking about living in a residential care home, in The Open University 1999) Further reading Cross. M. (1993) Pron Child, Safer Child,- A Handbook for Parents and Carers of Disabled Children. London: The Women’s Press. Keith. L. and Morris. J. (1995} Easy targets: a disability rights perspective on the Children as Carets' debate, Critical Social Policy, 15(2): 36—57. Maciarlane, A. (1996} Aspects of intervention: consultation, care. help and support. in is. Hales ted.) Beyond Disability: Towards an Enabling Society London: Sage. Morris. M, (1993} Creating a space for absent voices: women's experience of receiving assistance with daily living activities. in M. Allott and R. Robb (eds) Undetilondmg Healrlt and Social Care: An literati/notary Reader. London: Sage. l-‘i'i'ilsil: llfll ...
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This note was uploaded on 04/14/2008 for the course RHB 493 taught by Professor Larson during the Spring '08 term at Stephen F Austin State University.

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chapter 13 - UdflflKEUUH 11:12 Hdb4b31342 HUMQN HtHUiUtH...

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