Disability & Society, Vol. 18, No. 4, 2003, pp. 471–487
Service Provision for an
Independent Life
INGRID HELGØY*, BODIL RAVNEBERG &
PER SOLVANG
Stein Rokkan Centre for Social Studies, University of Bergen, Nygårdsgaten 5, N-5015
Bergen, Norway
ABSTRACT How is an independent daily life possible for disabled people when relying
upon professional service provision and the bureaucratic gate-keeping systems of the welfare
state? This article discusses this question in relation to an interview study. Eighteen mobility
disabled and 20 service providers in one local setting in Norway were interviewed. We point
out at least three categories regarding how independence is interpreted among the disabled:
the super-normal, the independent living activists, and those experiencing powerlessness and
lack of support. The analysis points out how these categories are constructed in relations
between the disabled person, professional service providers and the gate-keeping systems of
the welfare bureaucracy.
Introduction
In this article, we aim to understand how the conditions that will allow disabled
people to have an independent and self-determined lifestyle can be established
through their relationship with the service system. Taking this question as a point of
departure, we focus on the services and resources available to people with disabilities
in the case of the Norwegian welfare state.
Independence is a key concept both in theories of late modernity and in the
struggles of disabled people for better living conditions. In theories of late
modernity, the individual is disengaged from the traditional social structures of
family, social class and religion, and conceptually reintegrated through lifestyle,
friendship and an active reflection upon our own biography. Our relationships with
others are characterised by independence, representing what Giddens (1991)
termed the ‘pure relationship’. Our lives are structured in new ways, often labelled
*Corresponding author.
ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/03/040471-17
 2003 Taylor & Francis Ltd
DOI: 10.1080/0968759032000081011
472 I. Helgøy et al.
as a process of individualisation, and the key trends are reflexivity, career planning
and self-determination.
Disabled persons are influenced, as are most people, by overall trends in society
towards individualisation. In addition, disabled persons have been freed from
circumstances of living on a disability allowance in residential care (Morris, 1993).
People with disabilities, now more than ever, expect and are expected to have a job,
live in an apartment on their own and enjoy leisure like other citizens. Independence
is the key word for the new possibilities for participation available to disabled people.
Independence in the daily lives of disabled people is not possible to understand
solely within an individualised perspective. Independence is also about partnerships.
Neither social institutions nor individual bodies can be seen in isolation. The
manner in which disabled people manage their own lives will vary depending on
several factors ranging from the nature of the impairment to the broad social and
cultural environment (Butler & Bowlby, 1997).
Independence has been a main issue for the disability movement and debates
within the Independent Living Movement focus on how independence can be
established through control over service provision (DeJong, 1983; Oliver, 1990;
Reindal, 1999). Service providers and care professionals employed by local authorities play a key role in providing a resourceful and flexible support system necessary
to accomplish this goal.
Studies have pointed out severe tensions in the relationship between welfare
state professionals and their clients. A key problem is the clash between services
founded on the logic of welfare bureaucracy, and demands by people with disabilities that are founded in their life worlds (Lindqvist & Tamm, 1999). This tension
shapes patterns of an unyielding and bureaucratic service system, chronic resource
constraints and dehumanisation (Lipsky, 1980; Sandvin & Söder, 1996; Margalit,
1996). According to some disability studies scholars, disabled people are unwillingly
socialised into dependency by professionals (Oliver, 1996). Our study aims to
understand how these strains are influencing the roles utilised by disabled people
and service personnel. How are inherent tensions of the welfare state managed in
daily interactions? We believe both people with disabilities and service providers
develop a set of adaptations and roles when trying to achieve goals of independence
for disabled people in a social situation characterised by tensions between daily life
and bureaucratic regulations.
The discussion is based on interviews with mobility-disabled people aged under
60 years and significant service personnel they identified during the interviews. First,
we address the question of self-determination and independence. What does this
goal imply for disabled people? The answers to this question point to a range of
different adaptations made by disabled people. Personal history and social surroundings influence conceptions of an independent life. Secondly, we address the institutional setting as an important context in which different conceptions of
independence come to life. Our empirical focus is on how the service providers
understand their role in facilitating a self-determined lifestyle among disabled
people. They demonstrate different adaptations constructed from their mediating
position between disabled people and the bureaucratic welfare system. In the
Service Provision for an Independent Life
473
concluding discussion, we point out how self-determination and independence are
constructed in a dynamic relationship between disabled people and service professionals.
Method
Interviews with adult mobility disabled people and a wide variety of service personnel were conducted in a Norwegian city with a population of approximately 250,000
inhabitants. Interviews were conducted with 18 disabled people. The interviewees
were mainly recruited through the list of clients at a service institution for technical
aids, but some were recruited through the network of two disabled persons active in
the local branch of a mobility disabled peoples support organisation. The service
personnel selected were those identified by disabled people in stories about their
daily lives. The service providers consisted of nurses, home help assistants, exercise
therapists, physiotherapists, technical repair personnel, transporters, local authority
caretakers and personal assistants unskilled as professional carers. A total of 20
service personnel were interviewed.
We introduced the theme of independence into interviews with disabled people.
In addition, we emphasised the importance of obtaining their stories of how they
managed daily life. Our interviews particularly focused on their relationships with
service providers, but most of the interviews elicited the disabled persons’ life stories.
In our interviews with service providers, we focused on their relationships with
disabled people. We also asked if they experienced dilemmas in meeting the
demands of disabled people, their own professional standards and the demands
made of them as representatives of a rule-based bureaucratic system.
Independence in Daily Life
Independence among disabled people does not have a fixed meaning. The disability
studies literature points to at least two important ways of defining independence
among people with disabilities. First, independence can mean being able to perform
practical tasks alone or without direct help. This definition of independence places
a strong emphasis on passing as normal. Secondly, independence can mean being
able to make decisions about one’s own life, to be in charge in daily life, regardless
of how this is being accomplished. This definition of independence is of key
importance to the disability movement and the independent living ideology (Oliver,
1990; Morris, 1993; Shakespeare, 1996). These two ways of understanding independence were echoed in the experiences given to us by disabled people. A third
group, characterised by a situation of powerlessness and resignation, was also
present.
We commence our presentation and discussion of independence with a group
of mobility-disabled people who adhered to a kind of do-it-yourself ideology. When
we approached disabled interviewees, we introduced the theme of our study as
investigating their relations to service personnel. Several of the interviewees immediately pointed out that we may not have much to talk about. They represented a
474 I. Helgøy et al.
group that placed considerable emphasis on managing daily practical tasks without
assistance:
I do not want to rely upon other people. I wanted to prove that I could
manage on my own. I have managed it up till today. So, I have no home
services today. No one is coming here to my place. I manage all by my self,
from dusting to washing my clothes and making the bed and all those
things. (Interviewee 18, disabled man, age 31)
This man was a typical representative of the group we have named ‘super-normal’,
following a label used in the disability studies literature (Shakespeare, 1996). This
group wanted to be independent of professional services. However, this did not
necessarily imply not accepting help from relatives and friends, nor did they refer to
technical aids and the maintenance of these. They took this aspect of welfare state
services for granted. Their statements about ‘managing on my own’ referred mainly
to receiving direct practical assistance from a care professional.
Independence defined this way is about passing as normal. This is a main
strategy for coping with disability according to the theory of stigma (Goffman,
1963). In more recent studies on disability, this strategy is pointed out as resulting
from social suppression. Constructions of identities underlining independence as
personal effort is a kind of narrative that is problematic:
They [the personal effort narratives] all involve an element of denial or
failure to come to terms: they all involve a significant element of external
definition, of accepting external dis-empowering agendas. A temporary or
compromise identity may be developed, but it is frail, and ultimately has
costs for personal psychological happiness and security. (Shakespeare,
1996, p. 100)
If we accept this critical perspective, there are two components to a positive
construction of self: first, the core idea introduced in the social model of fighting for
a reconstruction of disabling environments. Secondly, we can point to the acceptance of the disability and the possibility of leading a full and independent life whilst
relying upon personal services. The second of these is important to the management
of daily life tasks. Independence as command over services is of prime importance
to what we have labelled the ‘control group’.
Members of the control group define independence as the ability to control
service provision in directions that are important for a self-determined life. For this
group, a full array of services is important for establishing an independent life:
As long as I do as much as I can myself without it affecting my social life,
it is okay. Some help is needed when I want to give priority to studies,
friends and interests … The help I receive makes it possible for me to be
the person I am. (Interviewee 11, disabled woman, aged 24)
This woman’s account is representative of the control group. She illustrates a core
trait to this group when she points out that she does not think about practical tasks
as important for the creation of independence. The focus is not on the goal of
Service Provision for an Independent Life
475
rehabilitation medicine, to increase the level of bodily functions. The main issue is
the level of support and personal control in service relations that is necessary for
achieving independence. The control group gives priority to studies, friends and
hobbies, instead of using energy to rise from bed, cook and clean the house. Mastery
of practical tasks was not especially important for her in the pursuit of independence. Services enabled her to do the things she wanted to do.
The ideas of the control group are closely related to those of the Independent
Living Movement. This movement is challenging what they call the rehabilitation
paradigm. They point out that this paradigm is based upon subordination of the
client role under an expert regime and is a threat to the possibility for disabled
people to live an independent life (DeJong, 1983).
The two ways of understanding independence we have introduced are anchored
in patterns well known to disability scholars and activists. In the analysis of the
interviews, although we took great care not to impose these categories on the
material, they soon revealed their profound relevance. However, they did not fit all
the interviewees. In addition to the super-normal and the control group, a third
group also became apparent. Both the two former groups saw themselves in a
situation where they exercised power in their own lives, even if their situation was far
from ideal. The third group strongly felt betrayed by the care giving systems or just
accepted whatever was given to them.
This last group, the ‘powerless and resigned’, expressed the feeling that they
had a very limited influence on their own lives in two ways. First, some directly
pointed to services and arrangements they lacked, which made their lives problematic. This sub-group had either super-normality or control as goals in life, but
explained they lacked the resources, mostly medical treatment, to present their
situation as one of independence. Their stories were preoccupied with the medical
treatment of their bodies:
Independence for me is that I will turn independent the day I get what I am
entitled to. I do not get enough (medical) treatment to be independent. All
the time I am hampered by the inadequate treatment system. (Interviewee
8, disabled male, aged 33)
The remainder of this powerless and resigned group accepted their bodily condition.
Their stories were marked by a passive and resigned attitude to the shortage of
services and arrangements:
Interviewee: When I found out I could not do things myself any longer, it
was great to get some help. Now, I am happy for all the help that is given
to me … I had a physiotherapist, but she suddenly disappeared because she
had so much to do.
Interviewer: Have you not tried to protest against this?
Interviewee: No, I am not the kind of guy who nags so much. (Interviewee
2, disabled male, aged 50)
The powerless and resigned sub-group had a passive attitude towards service
476 I. Helgøy et al.
provision arrangements. To a large degree, they took the classic role of patient in
their daily lives.
Emergence of this powerless and resigned group strongly indicates the need to
explore the relationship between the helper and the helped. As Finkelstein (1980,
1981) has pointed out, research on attitudes towards the provision of help have
traditionally tended to focus on the disabled person. He holds that there should also
be a focus on the behaviour and roles of the helpers as representatives of a socially
determined relationship. In the 1980s, Finkelstein described a new phase in which
the helper/helped relationship had been reformed as one of equality and cooperation. Our point of departure is that the equality and co-operation between
helpers and the helped varies according to the heterogeneity of disabled people and
the types of professional helpers.
One study from Norway identifies a defensive psychological structure of experience among some disabled people (Fossestøl, 1996). Their attitudes are characterised by ambivalence. They want independence and responsibility for their own lives,
but are reluctant to pay the necessary price to achieve independence. This reluctance is amplified both by the social surroundings and by the service personnel who
express a standardised concept of the disabled people as passive receivers of care.
This point is also made by Oliver (1996), who identifies professional norms among
service providers that create and maintain a culture of dependency among disabled
people. Barron (2001) articulates an understanding of resignation among disabled
people in relation to service regimes as a lack of abilities to live up to ideals of
self-sufficiency in everyday life in the service system.
The analyses offered by Fossestøl, Oliver and Barron support our analysis,
which is that the attitudes among service personnel are a main component in the
construction of possibilities for independence in daily life among mobility disabled
people.
Roles in Service Provision
Having a mobility disability implies a close involvement with service providers.
Everyone with severe mobility disabilities is a user of assistance, both through the
arrangement of technical devices and direct assistance with practical tasks. Among
disability activists there has been heavy criticism of service providers placing the
disabled person in a passive client role (Oliver, 1996). This criticism portrays the
relationship between client and professionals as an asymmetrical power relationship
favouring the professions. Within studies of the professions, the relationship between
professions and clients has traditionally been treated as beneficial for both clients
and society (Parsons, 1966). Today this is not so obvious. As discussed by Oliver
(1996), the authority that the professions derived from formally accredited occupational skills, norms and rules within the welfare bureaucracy allows them to define
their clients’ needs, but in the long run these definitions do not adequately reflect
the demands of their clients.
Client differentiation has also become an important factor in inter-professional
relationships (Abbott, 1988). Traditionally, the professional literature has discussed
Service Provision for an Independent Life
477
client status (low-status, high-status, wealthy, middle class) as an important dividing
factor within and among professions (Abbott, 1988; Burrage et al., 1990). However,
client differentiation can also include differences among clients themselves that are
irrelevant both to status and bodily characteristics. In some instances, the relationship between client and professional may be reversed or equalised due to the
professional acknowledging the qualifications and competencies of the client.
We believe that both disabled people and service providers develop a set of
adaptations and roles when trying to achieve goals of independence in a social
situation. While the professionals’ skills are a central part of professional judgement
and decision-making, other considerations have to be accounted for in daily service
provision. When implementing welfare state policy, the service providers bring with
them the logic of the welfare-bureaucracy. Norms of equality and efficiency, standardised routines and procedures, and budget control have to be included in the
service provider’s decisions. Furthermore, the service provider is constrained by the
pattern of division of tasks, routines and collaboration of local municipal service
organisation (Lipsky, 1980; Lindqvist & Tamm, 1999).
Therefore, we have to incorporate these different dimensions in understanding
how the different roles of service providers are related to different strategies used by
disabled people. That means that we do not find a one-dimensional way of practice
among the service providers. Instead, we find a set of roles that can be characterised
as heterogeneous and complex, and types of power relationships that can be both
asymmetrical and symmetrical.
In the literature there are a several examples of classifying the different roles
played by service providers. Barron (2001) uses the dimension of help-control in her
analysis of professionals, and Lindqvist & Tamm (1999) focus upon the range of
skills possessed by professionals. We believe that while these are relevant dimensions
of analysis, they are not sufficient for our purpose.
Analysing the way occupational groups have come to deal with how their
position is structured has led us to establish an analytical set of occupational roles
in opposition to existing empirical roles. The reason for this is that we have found
that professions are relating to, and dividing their attention and tasks in response to,
their clients’ definitions of independence, as well as their own ideologies, skills,
definitions of need and work organisation.
We have found a set of five service personnel roles to be important influences
on the type of relationships formed between mobility disabled people and professionals. The roles are not specific to a single vocational position within a structure
of service provision, but are related to changes within central welfare paradigms,
norms and ideas, some of which stem from new demands of disabled people. These
processes, along with client differentiation, have led to changes in tasks, attention to
clients and division of labour within this service-providing system.
The Rehabilitator
The main idea behind the rehabilitation paradigm is that by undergoing rehabilitation, the disabled person will be able to improve his or her functional level, and
478 I. Helgøy et al.
thereby possibilities for changing their own life. The role of the rehabilitator is a
strong one that continues to be played out by occupational groups such as exercise
therapists and physiotherapists within the service providing system. The role is based
on the norm that disabled persons should be able to help themselves in most
situations. The duty of the rehabilitator is to motivate the disabled person, and help
him or her to do the things in daily life with as little assistance as possible:
If you grow up with these assisting services, they present to you an ideal of
independence. This ideal is about how much you are able to take care of
daily tasks without help. And it is expected that you shall take great pains
and x hours of training and therapy and other things to accomplish that
goal. (Interviewee 11, disabled woman age 24)
In many ways the rehabilitator expects the disabled person to be willing to conform
to this rehabilitative ideology, and that he or she accepts that the rehabilitator knows
what is best for her or him: ‘… we do our job best when we put our hands on our
own backs and give advice … we are motivating a lot, especially when the person
says it is painful to do certain movements’ (Interviewees 21 and 22, exercise
therapists). ‘Sometimes we make the decisions (for the disabled person), perhaps
some people need a push to go on …’ (Interviewee 23, exercise therapist)
The relationship between the rehabilitator and the disabled person is a classical
asymmetric relationship. Authority of the service provider over the disabled person
is a given aspect of the relationship, and is strongly connected to both the rehabilitator’s professional skills and the welfare policy of ‘help for self-help’:
They [the disabled persons] are to do as much as they are able to do. I am
not supposed to do things they can manage themselves. That point is clear.
The guy I am working with, he wants to do things by himself. But the other
one, she wants me to do things she can do by herself. In this case I had to
set a limit. (Interviewee 37, part-time home help assistant and part-time
personal assistant)
The rehabilitators have, in the terms of Abbott (1998), strong jurisdiction over their
task, which gives them authority over both the client and other professional groups.
There seems to be no possibility for the disabled person to reach a position of power
within this kind of relationship. The only way for disabled people to gain power and
to live an independent life is by leaving the relationship, through physical training
and self help. If disabled people want to spend their time doing activities other than
training, a conflict arises in this kind of relationship.
This conflict arises from the narrow focus on physical function within the
rehabilitation ideology.
The Servant
The new role of servant within the contemporary service system has been strongly
influenced by debates among organisations of disabled people in the western world
and the Independent Living Movement (DeJong, 1983). The fundamental debate is
Service Provision for an Independent Life
479
focused on the mismatch between disabled peoples’ demands for flexible and
extensive help and the organisation of the welfare state. An important demand from
disabled people is that service providers should be unskilled, and that disabled
persons themselves should decide the type, quantity and content of the help they
receive:
When you get personal assistants you get much more out of life and have
time to do the ordinary things other people do. You are not a poor person
sitting there and getting served everything … you live a normal life and take
part in the ordinary processes (as baking a cake) as far as possible. It’s up
to me to say if I want or do not want to do something. (Interviewee 13,
disabled woman, age 28)
Disabled persons have been a major challenge to the welfare bureaucracy and
welfare state professions through local Independent Living Movements. Subsequently, the traditional notion of client has changed. Clients within the disability
movement today are not only individuals in need of care, but can also be employers
and members of highly organised groups. According to Abbott (1988), this type of
client differentiation is an important factor influencing the relationships between
occupations in professional work.
The role of the servant is highly visible in the evolving group of unskilled
‘personal assistants’. We also recognise this role in the occupational position of
caretaker that is located inside the integrated municipal system. The caretaker is a
technically skilled worker providing an ambulant service mainly in technical and
practical operations in the home of the disabled person:
We are supposed to reach a certain level of quality in our service for the
clients … Perhaps I am a bit stupid in my work, but I feel that my job is for
the users, and then we have to act quickly … That’s what it’s all about.
(Interviewee 34, local authority caretaker)
To date, the tasks carried out in the servant role seem to closely match the wishes
of disabled people and comply with their instructions:
I am nearly his right hand during 4–5 hours a day. I do all that he does not
manage, from washing the car to cleaning the flat from top to bottom … he
can ring me one Thursday morning and tell me that I have to come
because he needs to go shopping and to deliver the car to a garage … he is
the manager, dealing with the financial budgets, employing people and he
administers it all. (Interviewee 37, part time personal assistant and part
time home help assistant)
Client differentiation has thus created a new space in the service providing system,
creating personal assistants, a loose occupational group, which, according to
Abbott’s (1988) perspective, has no jurisdiction over its tasks. The jurisdiction is
elsewhere, partly with the client and partly with the municipality and the other
professions.
480 I. Helgøy et al.
The Caregiver
The caregiver tasks have traditionally been a main pillar of the welfare state. Public
caring has developed alongside the development of the modern welfare state and is
a very important type of service, satisfying the needs of many different people in the
municipalities. The caregiver today can be described as a role that includes helping
with practical tasks such as cooking, shopping, giving medication and personal care.
Representing this role, we find mainly home help assistants and nurses employed by
the municipalities. The authority of the caregiver is partly based on knowledge,
partly placed in the service system. This again implies a traditionally asymmetric
relationship that gives most authority to the caregiver. According to Abbott’s (1988)
terminology, the jurisdiction is not as clear as in the case of the rehabilitator. The
caregiver has more unpredictable tasks and is free to define what the disabled client
needs:
The home service nurses can suddenly find out that you need something.
They have access to most of the things that happen to you, at least
everything concerning help with practical tasks. I have experienced that
they suddenly just take an initiative. I believe they look upon it as their task
to take care of such things. It has been difficult to underline that one is
actually able to take care of such things oneself. (Interviewee 11, disabled
woman, age 24)
The caregiver experiences tensions between the demands of disabled people and
their own professional standards. Disabled people want service based upon flexibility
and individuality. An individually adjusted service seems to be consistent with
neither professional standards nor the working conditions of the caregiver:
… it is impossible for us to give people the help when they want it … we
simply do not have the time to be flexible. If somebody wants to take a
shower a day, which differs from our routines and plans, a difficult and
problematic situation can arise. (Interviewee 36, group interview with one
nurse and two home helpers)
For the caregiver, the routines and the lack of resources such as time, together with
their own professional standards, are potential sources of their conflict with disabled
people.
The Shock Absorber
The service providers, due to their roles as representatives of the welfare services, are
often today identified, and associated with a complicated and unkind bureaucratic
welfare system. They are the personification of the system of power. Because of this,
the service provider is placed in an unpleasant position between the bureaucracy and
frustrated and unsatisfied people with disabilities:
Working for people who are in a difficult situation is in itself very difficult,
and especially at home. We visit them at their homes, we are on the service
Service Provision for an Independent Life
481
side. Sometimes we have to deal with situations that are close to threatening, violence and harassment. Several employees have quit their jobs
because of certain users. We have clear examples here. (Interviewees 21
and 22, exercise therapists)
This state of affairs is closely linked to chronic resource constraints within the
welfare state (Lipsky, 1980). It can turn the workplace into an arena of conflict and
force service providers into the role of absorbing the frustrations of unsatisfied
disabled persons. Nurses and home helpers often find themselves filling this role, but
exercise therapists also experience this situation:
We are bumpers. We are service persons and bumpers. And because we
very often work alone, these bumps become very tough, especially if one
does not have support from the management department. (Interviewees 21
and 22, exercise therapists)
Obviously, it is not a voluntary role, as it is associated with a great degree of
unpleasantness for the caregiver. It is a role fully shaped by the clients in opposition
to the welfare system. Since neither the shock absorber nor the client obtains any
advantage from this arrangement, the question of power asymmetry is irrelevant to
this situation.
The Lawyer
Under some circumstances, Lipsky (1980) argues, street-level bureaucrats convey
information to their clients about how to work in the system. The central competence of the role of the lawyer is knowledge about the bureaucracy, about the rules
that regulate the services, about the organisation and co-operation, and about the
practices. We find the lawyer role in different professional occupations. The most
obvious are the professions working in the front line such as physiotherapists,
exercise therapists and home help nurses. An important task for the exercise
therapist is to write applications for technical devices and follow up on the decision
process:
Before we come to a conclusion, I do several visits at their home. I discuss
the person’s thoughts and wishes with them. Afterwards I visit him or her
again and give them the opportunity to read what I have written and for me
to explain it. (Interviewee 24, exercise therapist)
We also find the lawyer role among personal assistants. In some cases, they advocate
the interests of their employers (disabled people) by assisting them to find their way
through the jungle of the welfare bureaucracy.
Two exercise therapists (21 and 22) told us of another example illustrating
these tasks. The episode they referred to was an evaluation of the need for practical
adjustment at home. The disabled person in question had difficulties reaching up to
the shelves in the kitchen, and planned to apply for a wheelchair that could be raised
and lowered. The exercise therapist knew that it was also possible to finance
alternative solutions to the problem. One of these was a reconstruction of the
482 I. Helgøy et al.
kitchen, in which the shelves were brought down to a level where they can be
reached from an ordinary wheel chair. This is more expensive, but better suited to
the needs of the disabled person. Presented with this possibility, the person in
question soon agreed to this solution to his problem, a solution he was unaware of
prior to counselling by the exercise therapist.
The tasks of the lawyer are closely related to the gate-keeping positions in the
welfare system (Stone, 1979; Heinz, 1991). Gatekeepers are professional roles that
have a position in regulating the access to goods and services. The lawyer negotiates
with the gatekeeper, often indirectly, about the possibilities in the formal rule-based
system for distribution of goods and services such as practical assistance at home
and technical aids.
The symmetry in the lawyer-disabled person relationship is not obvious. The
jurisdiction area is not well defined. The lawyer role represents a grey area in the
professional knowledge of the different occupational groups. In this way, both the
disabled person and the lawyer might have power in the relationship, but as we will
see, this relationship is weakest for clients that most need it.
A Discussion of Service Relations
The outlined pattern is made up of three different strategies among the disabled
persons interviewed and five professional roles. The question of main interest to us
is how the relationship between the service level and disabled people affect the
differences we find at each level. Is there a kind of dynamic in the relationship that
leads to a reciprocal reinforcement of the professional orientations and strategies of
disabled people? In Table I we indicate the relationship between adaptations to the
goal of independence among disabled people and the roles conducted among service
personnel.
The left column lists the three adaptations to independence we found among
disabled people. The middle and right columns list the five roles we found among
service personnel. The rows indicate how the adaptations among disabled people are
related to the roles among service personnel. For example, the first row illustrates a
matching of the super-normal adaptation, and the rehabilitation role and the lawyer
role executed by service personnel.
In our discussion, it is important to underline the point that this model
TABLE I. Constructions of independence
Adaptations to independence
among disabled people
Roles exercised by service personnel
The super-normal
The rehabilitator
The control group
The powerless and resigned
The servant
The caregiver
The lawyer
The shock absorber
Service Provision for an Independent Life
483
represents a simplification. We have attempted to identify the characteristics of the
most important parts of the relationships between disabled people and service
personnel. We have presented them at a level of abstraction not only relevant to the
Norwegian care and assistance systems, but as representatives of relationships
present in most welfare states.
One relevant question, however, is whether specific welfare state models
influence their internal service relations. The Norwegian welfare state, as an example
of the social democratic welfare state model, has some specific traits that distinguish
it from the continental corporative or liberal models (Esping-Andersen, 1990). The
social democratic model is characterised by a comprehensive state, strong citizens’
rights and universal welfare arrangements. In the corporative model (i.e. Germany)
the state plays a central role in maintaining core social structures and patterns, such
as status differences and the traditional family. The liberal models, which are present
in Great Britain but even more so in Australia and the USA, are associated with
extensive needs testing, a modest infusion of universalism, a weak state and a strong
market economy. These differences could influence service relations. The strong
diffusion of citizens’ rights in a social democratic welfare state could imply a stronger
possibility of disabled persons attaining rights to control the help they receive.
On the other side, as Berger & Berger (1978) point out, a universal trait of the
client–helper relation is the experience of ‘being processed’. The roles played by
service personnel of boundary spanning through their direct connection with the
client and through their knowledge of the means of serving their needs is also general
(Prottas, 1979). We believe that although the different relations we have pointed out
are present in most welfare states, the strengths among them could vary between the
different welfare models.
The rehabilitator holds, as we have discussed earlier, a dominating role within
the service providing system for disabled people. Closely related to this is the
disabled person as super-normal. This adaptation to independence among disabled
people receives a lot of attention from within the service providing system pursuing
rehabilitative ideas. The underlying norm is that the best way of living for disabled
people is to manage with as little practical help as possible. This norm corresponds
to the rehabilitator’s professional standards when meeting needs of disabled people.
During interviews, we experienced a clear example of this norm. In a group
interview with two exercise therapists, who represented the rehabilitator role in
much of the attitudes they expressed, they strongly recommended that we interview
a disabled person who we later found out adapted to the ideal of the super-normal.
The attitudes of the super-normal disabled persons and the rehabilitator fit
essential social norms, such as being self-sufficient, to do our best, to work hard and
so on, that legitimate the welfare state (Stone, 1984; Fraser & Gordon, 1994). The
rehabilitator (who can hold different occupational positions) is inclined to help the
disabled person who wants to reach this ‘close to being non-disabled’ goal. The
strong connection between the super-normal and the rehabilitator in a dynamic
relationship strengthen both the disabled’s adaptation and this role among service
personnel. As long as the possibility for independence and power lies outside the
relationship there is no point for the super-normal to obtain power in the relation
484 I. Helgøy et al.
ship. This, together with corresponding to the norms underlying the welfare state,
seems to have made the rehabilitation ideology resistant to change.
When we look to the control group in our study, we see that they contest the
rehabilitator, as well as the caregiver. Disabled people fight against the system in
order to define independence differently from the rehabilitation ideology. They also
oppose the inflexibility and routine-domination in the work of the caregivers. They
give priority to intellectual and social activities, instead of practical activities in the
household. This implies that the control group has its focus on power in the
relationship. In opposition to the super-normal, they are seeking control and power
in the relationship, and in co-operation with the service system. Without this system
and this power they do not believe themselves to be able to live an independent life.
They want to decide when, where and how the tasks are to be done. To some extent,
this group has been looked upon as troublemakers in the rehabilitation dominated
welfare system.
The control group has to some extent created the role of the servant. This role
is most clearly found among the occupational group of personal assistants. However,
there are movements in the direction of the servant role in other professional groups.
The control group/servant relationship does, as in the case of the super-normal/
rehabilitator relationship, represent important societal norms. The norm of independence is at the forefront of this relationship. There is a demand in contemporary
culture to decide what to make out of one’s own life, to be able to develop a personal
lifestyle and identity (Giddens, 1991).
This gives us two different ideals in the service system, relying on different
sources of legitimacy. The traditional norms of being self-sufficient are challenged
by norms of being in control of the service given. Disabled people, like other
recipients in the welfare state, demands influence, freedom to choose and flexibility
in their consumption of welfare services. This change has to be seen as a response
to the asymmetric relationships in the traditional service-system (Sandvin and
Söder, 1996). Instead of being in a traditional oppressive situation, the asymmetry
is inverted in favour of disabled people. The role of the servant is legitimated by
these quite new ideas in the welfare state and the content of the servant’s tasks is
being dictated by disabled people. The absence of formal skills, working routines
and tasks gives the servant a limited opportunity to establish distance in the
relationship.
For some clients the caregiver or the shock absorber represents the face of the
welfare state. These roles do not fit the expectations of the super-normal of doing
practical things by themselves nor of the control group in their demands for
controlling services. The caregiver and the shock absorber roles are strongly connected to the powerless and resigned. Clients are placed in the powerless and resigned
role partly because they are given services other than those they asked for, partly
because they receive too little of the welfare cake.
Powerlessness does not represent a strategy for independence, but is more a
response to a system that fails to deliver services. There are two main kinds of
responses: one points at the caregiver, the other at the shock absorber. The first
implies a total resignation and perplexed response towards the caregiver, who lacks
Service Provision for an Independent Life
485
the resources to provide the relevant help. The caregiver’s strategy is to take the
initiative and do things it would have been better for the powerless to do themselves.
This situation can strengthen the negative dynamics and the resigned role of the
powerless. Secondly, in situations where the powerless does not get enough help, the
service provider might experience being used as a buffer. Frustration among disabled people is channelled towards the service provider, but it does not necessarily
lead to change. Instead, the often aggressive response brings out a lose-lose situation
affecting both the powerless and the shock absorber.
Analysing the powerless or resigned, we also find a paradox in the role of the
lawyer. This role seems to be absent in the service professional’s relationships to the
group most in need of this kind of assistance. Although the group of powerless or
resigned have a strong need for an advocate, they will not match the essential
supposition, namely to be co-operative and easily eligible for services according to
the bureaucratic rules. The role of the lawyer is not easily made relevant in the
relationship between service personnel, and those who have adapted to the position
of powerlessness and resignation.
Concluding Remarks
Our perspective has established relations that are based upon different ways of
solving the question of being independent in everyday life. There is not only one, but
a variety of ways in which disabled people define independence. We have argued
that the definitions can best be understood when seen in relation to the modern
service providing system. We found three different adaptations among disabled
people according to the way they defined independence in relation to the service
providing system: the group of the super-normal, the control group, and the group
of the powerless and resigned. We have analysed these differences as influencing
relationships between disabled people and professionals in the service system.
In shifting the perspective to the service-providing system, we found a similar
differentiation in tasks that crystallised into roles and adaptations among professionals: the rehabilitator, the servant, the caregiver, the shock absorber and the lawyer.
These roles and adaptations mediate the tensions inherent in the traditional client–
professional relationship, and have resulted in new types of relations between
professions and clients. We have discussed how the rehabilitator best matches the
super-normals, how the servant matches the control group and how the lawyer
matches both. We have also discussed how the caregiver and the powerless and
resigned are left with each other, along with the additional role of the shock
absorber.
Our discussion brings out two important questions for further study and policy
development. First, the powerless and resigned are in a problematic situation. There
is a need for a better understanding of the situation of this group. There is also need
for political action in order to bring this group into a constructive relationship with
welfare services and organised disability groups, in order to overcome their powerless and resigned situation.
Secondly, an important question is how the role of the servant can develop.
486 I. Helgøy et al.
There are several professions involved in providing services and assistance to
disabled people. How can the servant role, important to the control group, be
developed among professionals exercising expert knowledge? This is a question in
need of further study and policy discussion. Today, we find the servant role most
clearly represented in the occupational group of personal assistants. In the Nordic
countries, this group is made up of unskilled women and students wanting temporary employment, both full time and part time (Askheim, 2002). How disabled
people can develop a long-term relationship to this base of recruitment is an
important additional question when discussing the servant role.
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