Independent Living in Sweden

Account of the emergence of the Independent Living movement in Sweden, the social policy climate at the time, its struggles, achievements and challenges from the perspective of the person who introduced the independent living concept to Sweden. Internet publication URL: www.independentliving.org/docs6/ratzka200302b.html. In the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." ("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDF, 1.46 MB).

by Adolf D. Ratzka, PhD (1), 2003

Contents

1. Origins of the movement in Sweden

1.1. The situation of persons with disabilities in Sweden in the 1980s

The movement of persons with disabilities

1.2. “Folkhem” revisited

Preparing the ground

1.3. The 1983 Conference on Independent Living

1.4. STIL’s proposal

The opposition

2. Development of the Independent living approach

2.1. STIL’s pilot project

The permanent solution

2.2. STIL’s working principles

De-medicalization and civil rights

Economic independence

De-institutionalization

De-professionalization: We are the experts!

Growth through individual responsibility

Democracy, self-determination and self-representation

Peer support

Local solutions

International work

2.3. The Personal Assistance Act of 1994

2.4. Independent Living Institute

2.5. Independent Living Sweden

3. Assessment and challenges

Footnotes



1. Origins of the movement in Sweden

For a better understanding of the Independent Living philosophy’s introduction, development, role and its particular interpretation in Sweden an account of the situation of persons with extensive disabilities in Sweden in the 1980s, before the introduction of the Independent Living philosophy and approach, will be helpful.

1.1. The situation of persons with disabilities in Sweden in the 1980s

Sweden is an industrialized country of some 9 million inhabitants who enjoy a relatively evenly distributed high standard of living. The extensive social welfare system for which Sweden is known dates back to the economic depression of the l930s when the labor-oriented Social Democratic Party began its almost uninterrupted rule. In the Scandinavian tradition government is seen as a form of mutual insurance for all where, ideally, each citizen contributes according to his or her ability through paying taxes and is entitled to services according to his or her needs. In this tradition government has adopted a comprehensive view as to the circumstances in which state intervention and support for individuals is called for. As a result, the definition of what areas of human endeavor are to be considered the responsibility of the collective is wider in Sweden than in most other countries.

Permeating most Swedish social policy is the vision of the “folkhem”, (literally translated “the people’s home”), the view of the state as a close community, similar to the family, where all members in solidarity support each other. Since the 1930s the image has been a guiding force in the development of Swedish labor market and social policy instruments.

Here is not the place (2) to enumerate the policy instruments designed to maintain a high level of labor market participation, healthcare coverage and income compensation or support. In the area of disability, an arsenal of measures is intended to allow persons with disabilities to maintain a modest but secure standard of living through income supplements and special support services. Thus, there are social insurance payments intended to cover the extra living costs of a disability, flexible early retirement pensions, medical rehabilitation including free assistive devices, vocational rehabilitation including workplace adaptations, assistance and assistive technology at work and subsidization of employers’ wage costs for disabled employees, community-based homehelp to support disabled and older persons in their homes, supported living with 24 hr access to attendant care, respite care, housing adaptation grants, small group homes for persons with intellectual disabilities, para-transit services and more.

Individualized support services vs. inclusion through Universal Design and non-discrimination legislation

In line with Sweden’s tradition of income re-distribution and compensation payments, policy instruments in the area of disability consist of income supplements or supportive services in kind. Thus, the lion’s share of Swedish social policy, then and today, is geared to support the individual through a package of payments and services in kind. Measures aimed at preparing society in general to include persons with disabilities through what we today call Universal Design were an exception in the 1980s.

The individual’s claims to payments and support services and the public’s responsibilities in this respect are regulated by law. In common language these benefits are referred to as “rights”. Foreign visitors discussing disability rights with Swedes are easily confused, since their Swedish counterparts when talking about rights are likely to think of benefits such as housing or car adaptation grants, early retirement pensions or special and segregated transportation services but hardly of rights in the sense of civil rights, i.e. non-discrimination in housing, transportation, education, employment, access to public buildings, communications and media, etc. There has been considerably more interest in individualized support services than disabled people’s civil rights which is illustrated by the number of articles in newspapers and disability magazines about, for example, special transportation services which probably exceeds the number of articles about accessible public transportation by a factor of ten. In fact, until the middle 1990s “discrimination” was rarely used by the established disability organizations. As one visitor observed, “you Swedes have sold your rights for adjustable kitchen counters and swivel car seats” (3).

The most notable exception to the above mentioned predominance of individualized measures represents the Building Code of 1977 (Svensk Byggnorm) which stipulates wheelchair access to all units in new residential buildings of three or more floors through barrier-free passage from sidewalk to all apartments including spacious elevators, kitchens and bathrooms. Due to this far-sighted inclusive measure, designed to enable the rapidly aging Swedish population to stay longer in ordinary housing as opposed to having to move to senior citizen homes, the wheelchair-accessible portion of the total housing stock in most cities was probably close to 10% in 2002. This, in international comparison, high percentage has provided people with physical disabilities with a modicum of choices in the housing market which has contributed to the phase-out of residential institutions. 10% of the housing stock with wheelchair access, however, still implies an effective segregation and marginalization of persons with physical disabilities in terms of limitations in housing choices, geographical mobility as well as opportunities for social contact and participation in the community.

Similar building codes for public buildings would have been more effective, if adequate mechanisms for redress, monitoring and sanctions had been provided. Even local governments themselves (with the power to grant building permits) frequently build inaccessible environments.

Residential institutions – in many countries a common fate for disabled persons without family to assist them in their daily living - had been phased out in Sweden by the 1970s. Intellectually disabled persons had moved to small group homes consisting of six persons plus staff in the community. For most physically disabled persons who needed barrier-free housing and assistance with the tasks of daily living there were two main alternatives. One was living in apartments or single-family homes that were specially built or adapted by the local government and where assistance was provided by the local government’s community-based homehelp service. For people with extensive assistance needs who lived by themselves (or without family members whom they could rely on for supplementing the often insufficient home help services) the only choice was to live in cluster housing facilities with access to 24 hr attendant care, where they existed, or in nursing homes. After 1980, the new national building code, mentioned above, contributed to a slowly increasing stock of wheelchair-accessible housing and gradually improved housing options for those who could manage with municipal home help services and who did not need cluster housing.

Concerning public transportation, in 1979 a law was passed intended to insure barrier-free transportation by 1990. However, the lawmakers - intentionally or not - did not add an operational definition of accessibility and, most significantly, sanctions. As a result, Stockholm (whose City Council intends to make the city the “world’s most accessible city by 2010”) in 2002 still did not have a single bus that a person using a power wheelchair could board unassisted.

The area of transportation illustrates the tendency of solving access problems through special solutions. In some cities - often as a branch of the fire department’s ambulance activity - para-transit services for older and disabled citizens had evolved to complement inaccessible public transportation. Stockholm, for example, offers special dial-a-ride transportation services through larger minibuses equipped with tailgate lifts to persons who cannot transfer to a regular passenger car seat and who remain seated in their wheelchair during the trip. While originally intended to be a temporary solution only until public transportation would be barrier-free, the service has become an alibi and an obstacle to the introduction of Universal Design in public transportation, despite the special transportation’s limited service and other shortcomings (4).

Another illustration for special solutions are schools. Primary education is mandatory and local governments are required by law to provide at least one school in their judicial territory with a barrier-free primary school. Since the geographical areas of Swedish municipalities can be very large, many pupils with disabilities have to be bussed large distances to the next barrier-free school because they cannot attend the neighborhood school together with their non-disabled siblings or neighbors.

Secondary school is not compulsory which means that many of them are inaccessible to wheelchair users. (Only newly constructed or renovated buildings need to be barrier-free by law.) There are half a dozen secondary schools with adjoining boarding facilities that accommodate students with disabilities from all parts of the country under a state financed program. The solution contains economic incentives (5) for local governments which might lessen their interest in upgrading their secondary schools and in enabling disabled students to stay with family and friends in their familiar environment. The argument “separate is not equal” (6) is countered by pointing out that disabled students’ special needs can better met by concentrating resources in a few schools.

Unemployment rates among the disabled part of the population were around 60-70% throughout the 1970s and 1980s, according to official statistics. Each year over 3,000 young adults went straight from High School graduation to early retirement pension. Those who did succeed in getting employment were likely to end up in lower positions in the public sector.

People with a disability were not visible in politics, business and the media – with the notable exception of Mr. Bengt Lindqvist who after having served as Member of Parliament became Deputy Minister of Social Affairs (and is now the United Nations Special Rapporteur on the Equalization of Opportunities of Disabled Persons).

The movement of persons with disabilities

Sweden has had a long tradition of civil associations including disability organizations. Larger organizations with chapters in most parts of the country are eligible for annual state support through the Ministry of Social Affairs for their general running costs. Until the end of the 1990s, subsidy amounts were based on membership statistics which caused organizations to recruit members among the general population, since the allocation of state support did not depend on whether members had a disability. Thus, the state subsidies resulted in organizations where the majority of the members could consist of non-disabled persons who had full active and passive voting rights (7). It is probably for this reason that in common language (8) no distinction is made between organizations OF and FOR persons with disabilities. Most organizations can be considered to be a mixture of both in terms of membership composition and activities. Many raise funds through lotteries and campaigns in the streets, distribute money among needy members and offer social activities such as group visits to museums, shopping and recreational trips or language courses.

With a few exceptions the organizations are built around medical diagnoses with much of their activities aimed at informing the public about their particular medical conditions, lobbying for better medical attention and at raising research funds for their treatment. Several organizations owned their own rehabilitation facilities or vacation homes in attractive locations where they provided barrier-free accommodation including attendant care and organized activities. Some of these places were sold off at the end of the 1990s due to economic losses and diminishing state subsidies.

Until the 1990s non-disabled board members, chairpersons and functionaries were common in these organizations that claimed to represent the interests of disabled people. At least two of the largest organizations, by tradition, were headed by non-disabled national chairpersons who were Members of Parliament.

Representatives of the Swedish disability movement sometimes refer to the, in international comparison, strong position of their organizations. This is probably true in terms of economy. As pointed out above, the national government allocates considerable funds among the various organizations which would have great difficulties in surviving without these monies. The organizations - similarly to the labor unions and the organizations of tenants or retired persons - have developed close ties to the Social Democratic Party which has been in power since the 1930s with few and brief interruptions. The unofficial alignment has yielded results in terms of the inclusion of the disabled population into the large general welfare systems, briefly referred to above. On the downside, the argument could be made that, if the interests of the disabled constituency are combined with the ruling party’s interests, the cooperation might have hindered the movement in developing its own agenda, in seeing itself in opposition and in functioning as an effective watchdog for the interests of disabled people - regardless of which party was in power.

1.2. “Folkhem” revisited

For centuries, Sweden has been free from revolutions and major social upheavals. Its constitutional monarchy, state church, one-chamber legislative and centralistic administration enjoyed the population’s respect and trust as well as the reputation for impartiality and efficiency. Consensus and pragmatism rather than polarization and Hegelian dialectic have been the preferred style in public and private life. Conspicuously absent in the vision of “folkhem” was a discussion of checks and balances in the distribution of power between state and citizen, the place of individuals who did not readily fit into politicians’ and planners’ definition of “normality” (9), human and civil rights, self-determination and consumer power, quality of services and quality of life among service recipients; nor the notion that the collective’s primary task should consist of preparing the ground for the realization of individuals’ innate potential (10). Perhaps there was no perceived need for individual empowerment, since the state and its powerful authorities were assumed to always act in the citizen’s best interest. Weberian civil servants (11) - impartial, interchangeable and efficient executors of orders passed down to them – were expected to facilitate citizens’ lives and to free them from burdensome decisions.

The unchallenged trust in the country’s institutions may be one of the reasons why the increasing professionalization of social services that can be observed in several countries seems to have come furthest in Sweden. As one of the negative effects of this development I see a growing dependence among persons with disabilities in many aspects of their lives, dependence on a large cadre of social workers and similar professions. It is their job to assist people with disabilities, but many times the services they are providing are not designed in a way which increases our opportunities for self-direction. Instead, they often deprive us of possibilitities to exercise our own initiative, to use our judgement and develop self-confidence. As a result, many of us do not feel in control of their lives. In most countries, the lack of material services makes people with disabilities openly dependent on the charitable inclinations of their surroundings and forces them into a restricted and undignified existence. In Sweden, the mechanisms of dependence are much more subtle; many of us experience dissatisfaction, frustration, and despair without knowing where to look for the causes.

Preparing the ground

During my university studies in California in 1966-1973 my scholarship enabled me to employ fellow students as my personal assistants which not only greatly contributed to my independent life style but also was to form my thinking and later work in this area. In California, I was also exposed to the incipient Independent Living Movement. With this background I subsequently moved to Sweden where I found the situation of my disabled friends bewildering: material security at the price of independence, pride and dignity. Was this the result of the welfare state itself or of old prejudices continuing their work underneath the veneer of a modern society or a mixture of both? What was the missing ingredient?

I involved myself in the Swedish disability movement in the early 1980s. Among my early Swedish writings is an article (12) about self-determination for assistance users and an introduction of the Independent Living philosophy. The text suggested direct payments for personal assistance to be paid by the national social insurance fund (socialförsäkringssystemet) to individual users, regardless of income or wealth of the recipient or his/her family - a vision that would become reality in 1994 in the form of the Swedish Personal Assistance Reform (LASS) (13). The article also introduced “personal assistant” as replacement for the traditional Swedish “hemsamarit” (literally “home Samaritan”) and argued that the latter term was not conducive to a good self-image of the service user.


1.3. The 1983 Conference on Independent Living

In my capacity as board member of the Stockholm Chapter of the Organization of Polio and Traffic Injured (Riksförbund för Polio- och Trafikskadade), I organized in December 1983 a three-day conference on Independent Living in Stockholm - the first exposure of the Scandinavian (14) disability movement to Independent Living principles and philosophy. Over 100 participants listened to Ed Roberts (15) and Judy Heumann (16) who had just founded the World Institute on Disability (17) in Oakland, California; Ken Davies, Derbyshire Coalition of Disabled People, UK and Neill Slatter, Hampshire, UK. A number of articles in disability magazines and a TV interview with Ed Roberts and Judy Heumann resulted.

Most participants found the concepts presented refreshingly interesting but hardly applicable to Sweden, since they originated in a different social climate. The participants who did embrace the message were, interestingly, people who needed what we today call personal assistance, who felt that their interests were not represented by the existing organizations of persons with disabilities and who were not active members in any of them. Some of the most committed persons in the group lived in cluster housing. During the subsequent months, a group evolved consisting of some 20 persons with extensive disabilities and need of personal assistance who were prepared to improve their situation using Independent Living principles and philosophy as tools.

Under the leadership of this author, the group decided to concentrate on the most pressing issue, the lack of “personal” assistance (18), formulated a project proposal and formed a membership organization, STIL, the Stockholm Cooperative for Independent Living, with the aim of promoting user power through alternatives to public monopoly services. The vehicle was to be a pilot and demonstration project with direct payments for user-run personal assistance services.

For a better understanding of this project’s significance here is a brief description of the options available to persons in 1985 who were dependent on assistance by others in the activities of daily living.

Personal assistance, like no other service, illustrates the key elements of Independent Living. People who need personal assistance have always been made dependent on others for the most basic needs of life such as eating or using the toilet. Given this physical dependency the conclusion was close at hand to consider us as dependent on others also emotionally and intellectually. If you cannot pull up your pants as a small child, you may be treated as a small child in other areas as well. It is no surprise then that the Independent Living philosophy is most easily grasped by people who need personal assistance.

Attendant care services in Sweden date back to the 1930s when local governments first started home helper services to assist sick mothers with the care of their children on a temporary basis. Later, in the 1950s the services became available to old persons who needed help with simple household chores. The services were seen as a means to keep them out of institutions. With the explosion of the older population in the 1970s and 1980s the local governments' home help services had become one of the largest budget items and a common source of temporary employment among students and housewives.

Home help services were originally not intended for younger persons and people with extensive personal assistance needs. These individuals were kept in nursing homes. In the late 1960s, Fokus housing - cluster housing with 24 hr a day access to staff working from a central staff room for up to 15 users living in specially adapted apartments in an otherwise regular building complex - was introduced for younger disabled persons who needed personal assistance in their daily lives. This semi-institutional solution forced people to live in certain houses thereby limiting their geographical and social mobility. Users were unable to choose the workers who were to assist them. For example, women had to accept assistance by male workers even with the most intimate bodily hygiene. Users had to adapt their needs to the schedule of the staff that all inmates shared. Services were not available outside the apartment, at work, about town or when travelling (19).

Swedish local governments had the responsibility for 1) assessing the needs for supportive services such as homehelp or cluster housing, 2) financing the services through local taxes with some revenue sharing from the state government, 3) providing the services in kind (NOTA DE VIDAL: “en especie”) to the user, and 4) controlling the quality of the services.


1.4. STIL’s proposal

The municipal production monopoly was questioned by STIL claiming that it critically limited users' choices and created unnecessary dependencies. Instead, we demanded that local governments should pay directly to us users the amount of money that the individual’s services would have cost, if provided by the government. With the funds we would recruit and hire our assistants ourselves. This solution was to be an option to those users who wanted it.

The opposition

Our demands met mixed responses from the political parties. The conservative parties who had been propagating "freedom of choice under own responsibility" for decades embraced them wholeheartedly (which was enough for many people to see STIL as a right-wing project). The Social Democratic and Communist parties, both at that time in the government, reacted mainly negatively interpreting the demand for alternative solutions as an attack on the public sector. “Only a strong public sector can guarantee general welfare” was a typical response implying that the production monopoly was the core of the public sector and not to be questioned. The labor unions, in particular, opposed this "privatization" move on the grounds that it would put their members back to 19th century’s dehumanizing conditions of domestic workers.

The position of some Social Democratic leaders changed, after we declared that STIL was to function as a cooperative. The cooperative movement in Sweden represents a strong economic and political force closely allied with the Social Democratic Party. By organizing STIL as a cooperative we were able to get political support and free technical assistance from the Swedish cooperative movement.

The established Swedish disability organizations reacted with great hesitation. One of the reasons might have been their ideological reservations against our plan given their political ties. The fact that many of their members were dissatisfied with the municipal services seemed to matter less to the organizations whose representatives insisted that any improvement or change had to take place within the existing municipal services. One of the reasons for their insensitivity to their members' situation may have been the fact that these organizations were largely run by non-disabled functionaries (20). Among the disabled functionaries a common argument against our proposal was that individual users should not be burdened with administrative responsibilities such as hiring and training one’s assistants. These tasks, in their opinion, were the proper responsibilities of the local governments’ social workers.

Strong resistence came from the organizations which had been working hard for the improvement of the situation in cluster housing facilities that were increasingly critized by its inhabitants. For many years, these organizations had invested their energy and prestige into the cluster housing solution by, for example, demanding better training for workers in the cluster housing facilities. The training was to sensitize workers to the residents’ needs and make them service-minded. According to STIL’s diagnosis, the problem was the uneven distribution of power that put the service users at the mercy of the staff hierarchy in needs assessment, financing and service delivery. Once service users would gain the power to hire, train, supervise and fire their assistants, much of the problem would disappear, as people could move into the increasing number of accesssible housing units in the community with the help of their personal assistants.

Among the few proponents of the cluster housing concept who actually lived there themselves some seemed personally upset by STIL’s suggested solution. At public meetings, they would testify to their unbearable situation. With genuine indignation, sometimes close to tears, they would describe the minimal services they were receiving due to staff shortages, the large number of different workers they had to endure - the record being 67 different persons within one month – or how difficult it was to keep their jobs when they could never be sure about getting ready in the morning in time for the paratransit which could not wait. Despite the hardships they seemed to feel no urge for indidivual action; perhaps they derived a certain dignity from suffering from an injust system. Perhaps STIL’s proposed remedy was perceived as a threat, since it might rob them of a secondary benefit: the victim’s higher moral standing.

Most middle-management civil servants in the local governments who were used to see us as objects of their professional intervention questioned our ability to take over the employer’s role. Some of their doubts may have been due to the fear of becoming redundant, if their clients would manage their own affairs. On the other hand, some social workers – the minority – realized that most of us could grow into the role, if given the opportunity, time and support as we proposed.

The thought of personal assistance users functioning as employers of their assistants was foreign to most people at the time. People with disabilities, particularly those who are dependent on other persons’ help with the tasks of daily living, had been portrayed by well-intentioned politicians and journalists as the “weakest of the weak” whom society unquestionably was morally obliged to protect and take care of. In the absence of publically visible and obviously capable individuals who needed personal assistance our image of helplessness had gone unchallenged. It must be assumed that this image had been internalized by assistance users as well, especially, by people who had been aided in their socialization as disabled persons by disability organizations that propagated semi-institutional residential solutions such as cluster housing.

Swedish labor law puts a number of financial and administrative responsibilities on the employer. Compared to other countries, such as Denmark, the number of small and middle-sized enterpreneurs is small. At the same time, the media often point to the importance of private employment for the country’s economic well-being. Given these powerful images, “the weakest of the weak” on the one hand and employers as “pillars of society” on the other hand, it is not surprising that the viability of our proposed solution was not obvious.


2. Development of the Independent living approach

2.1. STIL’s pilot project

It took over two years of lobbying and publicity work until STIL received state funding with the help of Deputy Minister of Social Affairs, Mr. Bengt Lindqvist. The government grant, in turn, encouraged the Stockholm City Council to accept our plan and we could start putting our proposal to work in a pilot and demonstration project.

22 personal assistance users - residents of the City of Stockholm and 5 adjoining municipalities within Stockholm County - participated in the project representing a wide range of ages, family and housing situations and disabilities. Each of us was assessed, in terms of the number of hours assistance we needed, by his or her case manager in the local government’s home help service. The amount to cover the costs of these assistance hours (21), including wages and administration, was calculated by STIL for each of the participants and the respective local governments was billed quarterly in advance. The organizational details of our solution are described elsewhere (22). The project started January 1987 and during the following years we received wide publicity and political acclaim.

STIL caused attention. We stuck out in several respects. While, for example, the offices of traditional disability organizations looked more like local government branches with staff walking about in spacious hallways, our small informal office was crowded with wheelchair users, both visitors and workers, many with extensive disabilities who were able to work due to personal assistance at the work place. We obviously had first-hand experience of what we were talking about. This gave us credibility in the eyes of other personal assistance users, the city administration and the media.

We also felt compelled to voice our disapproval and concern over the situation of assistance users in a number of demonstrations (23). The actions gave us a radical reputation which we exploited in our dealings with authorities.

In February 1987, Mr. Bengt Westerberg, national chairperson of the Liberal Party (Folkpartiet Liberalerna) who had heard about us came to our office. A few weeks after his visit he started his speech in Parliament with an account of our initiative and the comment: ”In time all persons who need personal assistance should have the same possibilities to hire their assistants as Adolf Ratzka and his friends.” (24) Our approach appealed to his socio-liberal thinking that stressed freedom of choice, personal responsibility and support by the public.

The permanent solution

After two years, in 1989, we felt we had gathered enough momentum to try to establish our model as a permanent activity. Our plan was to operate as subcontractors and to offer our services to assistance users and local governments. Social service offices would purchase assistance services from us for those of their clients who choose to become members in the cooperative and wished to run their own personal assistance services à la (to the: nota de Vidal para los traductores) STIL.

This time the opposition against our proposal from the union of local government employees and the communist party was even stronger. According to them, our assistants would experience worse working conditions when working “in isolation” without fellow workers (25). The argument was refuted by the pilot project’s evaluation by an independent researcher specializing in the working environment of municipal home help workers. According to the study, personal assistants working for STIL members experienced only half the physical and psychological stress of their, otherwise comparable, colleagues who worked in cluster housing settings (26).

1989 represented the peak of the battle over the “privatization” (27) of municipal services in Sweden. Daycare centers run by parents as cooperatives had appeared a few years earlier offering alternatives to the local governments’ services. The parents’ interest in solutions that would fit more closely to their needs was interpreted by the ruling left coalition as a Thatcher-inspired attack on the Scandinavian welfare state whereas the Swedish conservative and liberal parties pointed to the central planning economies of Eastern and Central Europe whose end seemed near. In this ideologically infested climate our demand for a permanent option offered by local governments received national attention and was exploited by both sides for their political purposes. At the decisive meeting of the Stockholm City Social Services Board in June 1989 our proposal was approved with the slightest possible majority.

As a permanent activity we were now free to accept new members and to expand. Some of the old members who had difficulties with our somewhat militant style were now able to leave STIL and start their own cooperatives. During the subsequent years contracts, membership, production of hours, employed assistants, monthly wage payments grew at such a rate that our administration was close to breaking down. Also, we were still busy testing, adjusting and refining our routines, bylaws, and internal rules.

2.2. STIL’s working principles

In building STIL we tried to stay as close as possible to our interpretation of the Independent Living philosophy in order to create services that would empower us. We also wanted to set an example for other groups.

De-medicalization and civil rights

Since we saw the origin of most societal obstacles on our way to self-determination and equal citizenship in the medical model of disability, we emphasized the citizenship model of disability (28). We were not interested in rehabilitation or other health related issues. In fact, STIL did not even ask members why they needed personal assistance. Their medical diagnosis was not registered.

While most of us had physical disabilities a few members were sight-impaired and intellectually disabled, mainly children and young adults. Since our model assumed the ability to supervise one’s assistants and to shoulder administrative tasks, we experimented with “deputy supervisors” (29) who would suppport and complement the member in these functions.

We wanted to be cross-disability, the only common denominator being the need of personal assistance and the experience of having been deprived of control over one’s life. STIL considered itself a civil right organization of persons with disabilities where we saw physical integrity and control over one’s body and everyday life as a basic right.

We openly critized the established organizations whose medical orientation was apparent already in their name (for example, the Neurologically Disabled Federation, Asthma and Allergy Federation, Federation of Persons with Kidney Diseases, Federation of Persons with Heart and Lung Diseases, etc.) for reinforcing the medical model of disability which locates the problem within the individual. With their organizations and staff geared to research, treatment, patient counselling and fundraising their efforts, if any, of preparing society to include persons with disabilities were bound to be inefficient, we claimed.

Economic independence

The STIL cooperative functioned as a subcontractor to a growing number of local governments and we expected to build up a solid and gradually increasing business – provided we maintained a high quality of services, negotiated good prices for our services and kept our administrative costs down (30). Any surplus would be plowed back into refining our model, into initiating new pilot projects that would apply and test the direct payments concept for other social services and into financing other activities that were to promote our self-determination and participation in everyday life. To depend on grants from local and state government – as most other organizations – did not seem to give us the independence we wanted. The experience with setting up STIL had shown us that the pursuit of self-determination was a controversial matter and not supported by all quarters.

In deciding which activities we should take on a set of criteria was set up. First, we would only contemplate activities that promoted our long-term goals of self-determination and equal opportunities. The second criteria was sustainable economic viability. In this way, we were able to turn down proposals from members who suggested, for example, running a convalescent home in Southern Portugal. Such ventures while questionable already on ideological grounds would have also administratively and financially burdened us and put us in the same camp as organizations which we publicly critized for using taxpayers’ funds for maintaining hotels for persons with disabilities when an increasing number of tourist establishments were accessible.

A modicum of economic independence would enable us to offer training and employment opportunities in our office to people with disabilities without using government subsidized salaries for disabled people – a measure which, in our view, stigmatizes and keeps disabled workers away from the regular labor market. We did not want to follow the example of organizations which had built their activities around the subsidies, had become dependent on them and now defended a system which locked disabled people into underpaid and insecure positions (31).

De-institutionalization

We tried to create a system that guaranteed the individual maximum control over day-to-day operations without interdependencies among users, one of the most limiting aspects of institutions. For this reason, we vehemently faught the established disability organizations that worked for cluster housing which tied attendant services to specific housing units thereby subjecting the resident not only to limitations in geographical mobility but, more importantly, to a position without power over one’s everyday life. In this way, we observed, society’s prejudice against assistance users as helpless objects turned into a self-fulfilling prophecy. Our diagnosis, in particular, the notion of the uneven distribution of power as the primary cause for our second class citizenship, was not shared by other organizations which proposed dialogue and more worker training as remedies.

In our solution no other persons were to interfere in the relationship between inidivdual user and his or her assistants. Each of us had to be boss. Sharing assistants, for example, would have created the need for central staff for dispatching workers at the expense of the individual user’s autonomy; the individual would have had to adapt his or her needs to what amounted to an institution. It might be appropriate at this point to define what constitutes an institution. I suggest that we face an institution if

- there is no other alternative,
- users cannot choose who is to assist them with what functions,
- users have to adapt their needs to the needs of the whole scheme,
- there are written and unwritten rules which the individual user cannot influence,
- the assistance is limited to certain hours, activities, locations
(i.e., one has to live in certain houses as opposed to living anywhere),
- the staff providing assistance is shared by several persons,
- there is a hierarchy with the user at the bottom of the pyramid.

De-professionalization: We are the experts!

Institutions, whether stationary or mobile, need a staff hierarchy in order to function. The municipal home help organization, for example, had over a dozen levels of command between the politicians at the top and the user at the bottom of the pyramid. Workers were promoted on the basis of formal training, mainly in health related courses, and not on the basis of user satisfaction. In fact, staff were sometimes moved to other districts after the people they worked for had told supervisors about their preferences; personal attachment was believed to inhibit a professional and efficient relationship between worker and client.

Other disability organizations prescribed even more professionalization of workers not realizing that this would make the balance of power between users and service providers yet more unequal. STIL, on the other hand, tried to empower the users. Instead of subordinating ourselves to people who claimed to know best our needs, we felt it was time to assert ourselves as the only experts on our needs and as such design solutions and run the day-to-day operations.

Personal assistance users - not government officials or social workers - founded STIL and designed its organizational form. Most of us prefered workers who had no health-related working experience. For one, our assistance needs were practical and not medical in nature. Also, health-related training is geared to institutional settings where the patient's control of services is minimal. Instead, each of us trained his or her assistants in how tasks were to be done.

We did not want a hierarchy in STIL with social workers on top, personal assistants in the middle and “clients” at the bottom. Empowerment, as we saw it, does not occur in an expert-client relationship; it can best be achieved among equals.

Our demands for consumer power and expert status were not understood by other organizations at the time which seemed to have little confidence in the abilities of their members.

Growth through individual responsibility

The STIL solution entailed many responsibilities for the individual. For one, as a cooperative STIL depended on members’ involvement in the internal and external work. In STIL’s beginning it was particularly important to engage as many members as possible in shaping our solution, as we had no examples to follow (32).

STIL delegated most of the employer’s responsibilities to the individual members, since we believed that only by controlling day-to-day operations individuals could custom-design a truly “personal” assistance solution for their particular needs. This was in stark contrast to general solutions, such as cluster housing or municipal home help, which did not put any demands for active participation on the users but, as a consequence, could not take in to account individual needs. While the delegation of essential tasks presented work and difficulties for many members, we also supported each other in learning the skills required for these responsibilities.

In order to become a member assistance users had to pass a course. We offered peer support groups for users in various situations and on a number of topics such as relatives as assistants, refining one’s recruitment or supervision skills and so on. Through trial and error guided by peer support groups and individualized support by staff (who were assistance users) members were to acquire the skills necessary for recruiting, training, scheduling, supervising and, if necessary, firing their assistants.

The sharing of assistants among members was discouraged which meant there was no assistant pool to draw upon in an emergency. To an outsider these restrictions seemed harsh, yet we felt that without them central administration would increase at the expense of individual control.

Other disability organizations rejected the idea of putting demands on assistance users. Many of them had trained social workers in leadership positions who saw their organizations’ and the authorities’ role as one of alleviating and simplifying members’ day-to-day lives.

We set up training and support structures also because our experiment was closely watched by other assistance users, organizations of disabled people and by the public at large. We knew, should we fail, it would not only set us back in our quest for self-determination. A failure would also confirm prejudices against all assistance users as being passive and helpless objects of custodial care. Conversely, we saw STIL as an opportunity for personal growth. Learning to express one’s needs, direct other persons and take the initiative would change our image in our own and other people’s eyes. Self-determined personal assistance was to be our vehicle for regaining control over our lives.

Democracy, self-determination and self-representation

We chose the organizational form of a cooperative, since a democratic membership organization, with an emphasis on member involvement and training, seemed best suited for our purposes. Only personal assistance users, according to our bylaws, could be members in the cooperative and serve on its board.

Staff positions were primarily reserved for people with disabilities, preferably, personal assistance users. Given the high unemployment rate among disabled people – not to speak of assistance users - we felt we had to reserve the job and training opportunities in our organizations for ourselves. This meant that in contacts with politicians, civil servants, other organizations and the media only personal assistance users represented the coop.

In our experience, self-representation is very effective. For one, we did not need to give explanations and justifications to non-disabled staffers and consultants who would not be able to illustrate their arguments with their own experiences, as we would. Also, we noted that politicians or high civil servants often seemed genuinely interested in us, our experiences and suggestions and would listen attentively.

We made fun of established disability organizations with their often non-disabled staff and board members. What image were they promoting of persons with disabilities, we wondered, when obviously non-disabled persons would publically discuss our needs and their solutions? Were they trying to gain respect as philanthropists and humanitarians at our expense? While STIL did not claim that disabled people should refuse assistance from non-disabled persons in the struggle for equal rights, we did insist that our non-disabled allies should back us up from behind while we were at the frontlines.

Peer support

We knew from experience that receiving the money to employ one's own assistants would not automatically make a person a good employer. Persons with disabilities who grew up in over-protective parental homes or institutions can have difficulties in asserting themselves without becoming aggressive or denying their own needs. The transition in our role from being an object of public care to becoming the boss of other people is difficult and requires most of all a change in the perception of oneself. Peer support (33) in groups including role playing was used as pedagogical tool. For members who needed more individual guidance we had a "buddy" system with experienced cooperative members supporting newcomers on a one-to-one basis.

The use of the peer suppport principle in all our activities was another reason why we insisted on having primarily disabled persons working for and representing the coooperative. One ingredient in peer support is role modelling (34). The coooperative’s staff and representatives were to act as role models demonstrating to other disabled people, notably assistance users, that disability and dependence on personal assistance were no obstacles in doing interesting and effective work.

Role modelling was not deliberately used by other disability organizations. In the 1980s, the few leaders who did live in cluster housing or had home help service seemed to make a point of publicly displaying grief and resignation over their situation, perhaps, in order to show solidarity (35) with other unhappy residents. In my view, leadership entails a responsibility to honestly account for one’s achievements and failures, one’s experience with different solutions in order for persons in similar circumstances to learn from the example and to, hopefully, receive encouragement in their efforts to improve their situation. In this sense, an individual’s achievement becomes a collective gain.

Local solutions

Coverage in the national media and our own irreverent magazine STILETTEN (literally “stiletto”) resulted in calls and visitors from dissatisfied home help users and cluster housing residents from all over the country. We encouraged visitors to find similarly minded assistance users near them and to consider starting up, with our help, their own initiatives. We invited them for weekend training and offered them a start-up package including copies of our bylaws, internal rules, contracts and soft loans. In this way, we helped some 8 groups establish their own and independent personal assistance user cooperatives with very similar structure in such cities as Gothenburg (36), Malmö, Helsingborg and Eskilstuna.

In encouraging local small-scale solutions we intended to keep the new groups under local control and avoid a national superstructure with its concomitant expenses, centralization of decision making and representation as well as its slow and tedious representative democracy illustrated by the “big elephants” (our nickname for the established disability organizations).

International work

Due to my background and interest STIL had good international contacts for cooperation around personal assistance and other IL issues. In our contacts with related groups in, among other countries, Finland (37), Norway (38), Germany (39), Belgium (40), the UK (41), USA (42) and Japan (43) we shared information, arguments and methods. During the early 1990s STIL was the main contributor to the DPI Independent Living Newsletter that reached over 5,000 organizations and individuals in primarily developing countries, Central and Eastern Europe. Also, for several years we ran Independent Living Import where we tried to sell mainly greeting cards and toys imported from groups of disabled persons in developing countries (unfortunately, we lacked the marketing skills and manpower that would have been necessary to at least break even). For a number of years before South Africa’s regime change, STIL supported Disabled People South Africa’s regional development work in the Transkei and Ciskei with funds from the Swedish International Development Authority, SIDA (nota de Vidal: “Agencia Sueca para el Desarrollo Internacional (SIDA)).

Contacts within Europe intensified when ENIL, the European Network on Independent Living, was founded in 1989 with me as chairperson (subrayado de Vidal). STIL hosted several international seminars with guests from all over Europe including the former Sovjet Union. In the recent past, STIL has participated in European Union work under the HELIOS II program (where we represented Sweden in the Independent Living group) and under the EU program to combat social exclusion.

Due to these international exchanges STIL was well informed about developments abroad which we could use as arguments and illustrations in our contacts with authorities in Sweden. In this way, we were often years ahead of other Swedish organizations which tended to think that Sweden had nothing to learn from other countries. We also derived domestic goodwill when Swedish officials in their travels learned that STIL had a good reputation abroad.


2.3. The Personal Assistance Act of 1994

When, in 1989, the Social Democratic government appointed a commission to study the situation of persons with disabilities, one of the main areas to be examined were the conditions of persons who needed assistance with the activities of daily living. In 1991, a conservative coalition came into power with the leader of the liberal party (Folkpartiet liberalerna) Mr. Bengt Westerberg as Minister of Social Affairs who was to influence the work of the commission decisively. The result was the Personal Assistance Act of 1994. Mr. Westerberg’s political advisor in the Ministry, Ms. Inger Claesson Wästberg, comments “…this (the Act of 1994) was a big success for the civil rights movement that Adolf Ratzka and his colleagues started in Stockholm a decade before” (44) in reference to our role in the reform’s coming about. In his presentation of the law to Parliament the Minister acknowledged STIL’s and my role (SUBRAYADO DE VIDAL).

The reform (45) is a far-sighted direct payments instrument that contained many features which we either had established in the STIL model or demanded in our publications13 and presentations, such as use of the term “personal assistance”, coverage of admininstrative costs, one source national funding, needs assessment expressed in number of hours, no medical criteria but the person’s total life situation, no means test, tax free amounts directly to the user, freedom to purchase services from any service provider including the possibility of employing assistants oneself. Among its shortcomings were its limitation to persons under the age of 65 who had extensive assistance needs and the absence of automatic index updating of the hourly rate. Considering the Swedish recession of that time and the trend towards reducing the state budget at the expense of local governments, the existence of the reform is remarkable and can best be explained as a result of Mr. Westerberg’s personal commitment. The Assistance Act has since been praised by personal assistance users and their families and has been called “the century’s disability reform”. The former minister, now retired from politics, still refers to the reform in public as one of his most important political achievements.

While the law enables assistance users to purchase services from any provider, in 2002, close to 70% of payment recipients chose to contract their local government which deliver services in a form that, according to anectodal evidence, resembles their home help services. The rest bought services from private companies, some 15% chose the cooperative solution. After 1994, a multitude of smaller private companies and cooperatives appeared which resembled STIL in their organization. Some of their leaders were assistance users who had been trained by STIL.

The Personal Assistance Act has not only improved living conditions for thousands of assistance users and their families, it has also demonstrated to politicians and public the popularity and efficiency of direct payment instruments in the field of disability, where, in contrast to other areas of social policy, in-kind (NOTA DE VIDAL: “en especie”) services are still prevailing. Referring to the success of the Assistance Act it is now possible to argue for a wider use of direct payments for persons with disabilities.

Internationally, the Assistance Act has received considerable interest mainly due to its features of full coverage of assessed needs including assistance at work, household chores and parenting; absence of means tests; and coverage of administrative costs. Organizations of persons with disabilities in a number of countries have been using the Swedish reform as example and argument in lobbying for better assistance services.


2.4. Independent Living Institute

In 1993, the Independent Living Institute (46) was set up as a not-for-profit foundation by STIL and the Gothenburg sister organization GIL (47) for producing information and training materials and research and development work. Since 1996, with competitive grants from the EU and the Swedish General Inheritance Fund, the Institute has established a website with interactive services and a popular virtual library on Independent Living issues that currently receives over 1,000 visitors a day from all over the world. In 2002, the Institute started its project “Radio Independent Living”, the production of streaming audio files with programs on de-institutionalization and other IL themes. In the most recent major project information is compliled in an interactive database about companies and universities in different countries and their accomodations for trainees and students who need barrier-free housing, transportation or personal assistance.

The Institute’s other focus has been to spread information about and technical assistance for direct payment solutions. Examples are its pilot projects in the Slovak Republic for personal assistance and accessible mainstream taxi transportation (as opposed to special transportation services exclusively for disabled persons). Both projects succeeded in influencing Slovak legislation. Recently, the Institute’s pilot project for a similar accessible mainstream taxi scheme in the Stockholm area was turned into a permanent service (48).

Together with Spanish, Italian and Greek partners the Institute is currently working for spreading examples of good practice in the area of Independent Living to Southern European countries.


2.5. Independent Living Sweden

Since the early 1990s a formal national cooperation among the various Independent Living personal assistance cooperatives had seemed desirable for the purpose of coordinating training, information and lobby efforts. The task proved very difficult. Finally, at the fourth attempt we succeeded, in 1997, in incorporating an organization, Independent Living Sweden, ILS, that was to allow maximum freedom for local initiatives and yet focus our efforts to influence national politics. ILS was to promote solutions for self-determination, such as direct payments, and inclusion of disabled persons through Universal Design and anti-discrimination legislation.

ILS succeeded, among other projects, in organizing a national conference in Stockholm in 1998 on the need for civil rights and anti-discrimination legislation. We noted that other countries were moving towards Universal Design and inclusion while Swedish disabled people’s second class citizenship had largely gone unchallenged. As a first step, we demanded an amendment to the constitution that would add disability to the list of prohibited discrimination grounds. The amendment was to be followed up by comprehensive anti-discrimination legislation including standards and effective sanctions. Presenters were mainly highly placed persons with a disability from a number countries with anti-discrimination legislation (49) in place.

ILS organized a series of seminars on constitutional right and anti-discrimination legislation to which members of Parliament were invited. Upon ILS’s suggestion the Parliament’s Group on Disability Issues was formed with representatives from all parties. Before the national elections in 1998, ILS’ website published the results of a questionnaire to all candidates on ILS’s key issues. Also, the website offered candidates with disabilities form all parties space to present themselves.

Yet ILS never really got off the ground and had to be terminated due to our inability to attract sufficient motivated and capable persons with disabilities who saw ILS as their forum.

 

3. Assessment and challenges

The Swedish Independent Living movement presently consists of half a dozen personal assistance cooperatives with altogether perhaps 600 members who use the term Independent Living in their name plus the Independent Living Institute (not a membership organization). In other countries, the Independent Living movement accomplished national associations of local initiatives. Examples are the National Council on Independent Living in the US [1], the Canadian Association of Independent Living Centres [2] or IsL e.V. in Germany [3] - national bodies with membership organizations, structure, resources and representation in the administration and politics of their country. Not so in Sweden.

In addition, the Swedish movement consists of a handful individuals with disabilities who use the Independent Living principles and approach in their work and form a loosely knit network. Beyond that, probably a few hundred disabled people might acknowledge that they use our analysis in demanding self-determination in their lives. Finally, thousands of disabled people directly benefit from our efforts’ impact on their personal assistance and - most recently, transportation situation - many of whom might not be aware of the meaning of the term Independent Living.

In Sweden, the term “Independent Living” is equivalent to the user cooperative model of personal assistance. The Independent Living philosopy and approach, the immense body of literature and research on Independent Living, examples of far-sighted public policy in this area and the achievements of thousands of Independent Living centers and initiatives around the world are hardly known in the country which has been more interested in exporting than importing accomplishments in the field of disability.

STIL’s work had to be focused given our scant human resources. We chose personal assistance. Originally, we planned to introduce our approach - cash payments and peer suppport for self-determination and personal power - to several social service areas, one by one, but did not have the time and energy to get into transportation or the delivery of assistive devices.

In retrospect, our probably most far-reaching managerial shortcoming was the in-house design and running of our administration to create work and training opportunities for our members and other persons with disabilities. Today, it is easy to see that instead of developing our very own administrative system we could have contracted an accounting firm for the job and freed the leadership for other work. When I as STIL’s chairperson realized our mistake in the early 1990s, it was already too late to overcome the vested interests within the organization and to implement the necessary changes.

Limiting our focus to personal assistance we could not also function as a civil rights organization. We did work for equal rights through Universal Design and anti-discrimination legislation, for example, through demonstrations against inaccessible public transportation as early as the 1980s, when few seemed upset by our marginalization. We organized a seminar, in cooperation with the Handicap Institute [4], on anti-discrimination legislation in 1989, probably the first event ever in Sweden on this issue, with an impressive list of invited experts. [5] Yet to successfully present the US as an example in the field of disability – as we tried - would have required considerably more diplomatic skills at that time than we were able to muster up; the invited representatives of Swedish disability organizations did not see any relevance of the issue for Sweden.

The leadership in the Swedish Independent Living cooperatives and most of the membership were in their 40s and older when the Assistance Act of 1994 came into power. The generation factor as well as our concentration on shaping our service provision model apparently made us unattractive to younger people. Interestingly, younger persons with disabilities have recently discovered organizations abroad such as DAN, UK or ADAPT [6], USA which successfully impact public opinion by staging spectacular events using informal but efficient networking techniques.

Our experience is probably typical for many organizations that originally formed themselves to change social policy, turned into service providers and found themselves bogged down with day-to-day administrative work.

Terms such as “inclusion”, “empowerment”, “anti-discrimination legislation” have lately become household words among established Swedish disability organizations. Throughout the 1980s and most of the 1990s, we were the only ones who compared Sweden to Apartheid South Africa - and got ridiculed for these “extreme” accusations. Today, even charity-oriented medical diagnoses organizations might draw the parallel. The change, however, has probably come about not so much through the efforts of the Independent Living movement but through Sweden’s membership in the European Union. The Amsterdam Treaty, in particular Article 13, added disability to the list of prohibited discrimination grounds. As a member state Sweden could not very well stay behind this development and in his 1998 inauguration speech Sweden’s Prime Minister talked, for the first time in Swedish history, about discrimination in connection with disability. After the Swedish government had begun work on the implementation of the new EU language, the Swedish disability organizations felt safe to step in line. The long-needed inclusion of disabled people’s civil rights in the Swedish “folkhem” can therefore be expected to come, in time, through the European Union.

Yet there are other areas where the Independent Living movement will find plenty of work. So far, the movement’s lasting contribution to disability policy have been the articulation of the concept of consumer power, the notion that persons with disabilities are not objects of professional intervention but experts on their needs, and the recognition of control over one’s every-day life as a basic human right. Now that over one thousand persons employ their assistants themselves, collectively in cooperatives or inidividually, and thousands choose who is to provide services for them, it is impossible to turn the clock back and put us into institutions - stationary or mobile. The change in the public’s attitudes toward assistance users that is slowly coming about due, in part, to our work prepares the ground for further reforms in the direction of cash subsidies and consumer control. Given the present predominance of in-kind solutions in service delivery and professionals’ powerful position at the expense of consumers there is much work to be done. It will be the Independent Living movement’s task to act as catalyst in this development.

While we need to work for changes in policy to gain control over services, we must continue our work for changes in the service users’ self-perception. Otherwise service users will not be able to fully utilize their newly won freedom. As an efficient tool for this task, peer support needs to be further developed and spread to persons with disabilities who presently are not part of our movement.

In trying to bring about changes outside and inside ourselves it wold be helpful for us disabled people to better see what we have in common rather than what sets us apart. Similar to other minorities in their struggle for emancipation from external and internalized oppression, we need to discover our common history, the obstacles and milestones on our road to inclusion and equal rights, and our common experience of and reactions to the marginalization and discrimination many of us have been exposed to - regardless of cause and extent of our disabilities. We need a better sense of community [7] including a mutual understanding of our common cause in order to gain more unity and political momentum. Also in this important work, I see a role of the Independent Living movement with its emphasis on cross disability as opposed to medical diagnostic sectarianism.

In summary, the Swedish Independent Living movement can be seen as an attempt to import the missing ingredients to the Swedish “folkhem”. Our movement has helped some of us to taste today what most will take for granted in the future: pride and personal power.


Footnotes

(1) CV at www.independentliving.org/ratzka.html

(2) For an overview of Swedish social welfare policy in the area of disability during the 1980's see Ratzka, Adolf , "Independent Living and attendant care in Sweden: a consumer perspective", New York, World Rehabilitation Fund Monograph No. 34, 1986, p. 9, (available in Japanese from Gendai Shokan Co., Ltd., 2-2-112 Misakicho Chiyoda-ku, Tokyo), internet publication www.independentliving.org/docs1/wrfmono2.html#anchor3235368

(3) Personal communication from Mr. Shuaib Chalklen, 1998, then Head, Disability Section, the President's Office, Republic of South Africa.

(4) Until recently rides in Stockholm had to be booked two days in advance, during certain times of the day, with the exact times and addresses for pick-up. Drivers would often be late and rude. There is the risk of "forced sightseeing" and delays, since drivers may pick up or deliver other passengers on the way.

(5) The local government saves the costs of adapting schools. The students' costs for boarding and personal assistance are covered by the state government. Since students will live most of the time away from family, local governments are not obliged to pay for permanent adaptations of parental homes. In addition, after several years away many students lose contacts in their home town and stay in the new city after graduation. Thus, the new hometown will become responsible for paying any support services.

(6) From the US Supreme Court ruling in the case of Brown vs. Board of Education of Topeka of 1954 - one of the cornerstones of the US civil rights movement without which the Americans with Disabilities Act of 1990 would not have been possible. The case concerned a black girl who was forced to be bussed across town to the nearest "black" school instead of going to the neighborhood school which was "white".

(7) Exceptions have always been the organizations of blind or sight-impaired and deaf persons.

(8) The official Swedish translation of the United Nations Standard Rules for the Equalization of Opportunities of Disabled Persons uses the Swedish equivalent for "disability organizations" when the English original speaks of "organizations of disabled people".

(9) Probably the most flagrant human rights violations were the forced sterilization of 60,000 persons including persons with disabilities up to the 1970's. As pointed out in the literature, "deviants" were not welcome in this vision of "folkhem". For a brief account see Ratzka, Adolf, "Eradication of 'deviants': the dark side of the Swedish Model", 1997, internet publication www.independentliving.org/LibArt/Sterilization.html

(10) Cf., for example, this quote from George Grosz' writings, "Socialism entails that citizens in their every day life reach the right to freedom, equality, physical integrity and self-determination through transformation, by joint efforts of the people, of the societal conditions that obstruct the way to this right. (Author's translation)

(11) "The bureaucratic organization is characterized by a 'rational' and impersonal regulation of inferior-superior relationships. In traditional types of administration (feudal, patrimonial), the inferior-superior relationship is personal, and the legitimation of authority is based on a belief in the sacredness of tradition. In a bureaucracy, on the other hand, authority is legitimized by a belief in the correctness of the process by which administrative rules were enacted; and the loyalty of the bureaucrat is oriented to an impersonal order, to a superior position, not to the specific person who holds it." Excerpt from "Weber's theories", Encyclopedia Britannica, internet publication http://lilt.ilstu.edu/rrpope/rrpopepwd/articles/bureacracy2.html

(12) Ratzka, Adolf Hemtjänst - i vems regi? SHT 1982 internet publication www.independentliving.org/docs3/ar1982.html

(13) See www.independentliving.org/docs1/ratzka1998lass.html and www.independentliving.org/panetwork/questionnaire.html

(14) Holger Kallehage, chair of the Danish Polio Association and Bente Skansgård, Norway who subsequently was instrumental in starting up the Norwegian assistance user cooperative ULOBA (www.uloba.no)

(15) Ed passed away in 1995. Read friend Doug Martin's personal account in his commemoration. www.wid.org/pages/WID_Info/ed%20roberts/er_01.html

(16) See www.disabilityworld.org/04-05_02/news/heumann.shtml and www.ican.com/news/fullpage.cfm?articleid=EF02C8AC-73F2-4D8A-803BE94838018F97

(17) See www.wid.org

(18) While the term "personal assistance" has become a household word in Sweden, it has lost an important connotation in general usage. "Personal" has been taken to refer to the assistants' often intimate (= personal) tasks of daily living, such as personal hygiene. The other and politically more interesting dimension in the term is often forgotten: the individual user must be able to custom-design services to his or her own and unique needs by, among other things, hiring, training and supervising his or her assistants. See Ratzka, Adolf, "Personal assistance: an operational definition", internet publication 1997, www.independentliving.org/toolsforpower/tools15.html

(19) For a critique of the Fokus concept see section "Fokus or cluster housing" in Ratzka, Adolf "Independent Living and attendant care in Sweden.", internet publication www.independentliving.org/docs1/wrfmono3.html

(20) When hiring staff professional qualifications and political contacts were deemed to be more important than the experience of what it meant to be discriminated against and limited in one's everyday life.

(21) The single most difficult step in dealing with local governments was the negotiation of the price per hour we charged. STIL's approach was to "deliver better services at the same cost". The problem was that local government politicians and civil servants did not know the actual costs of their operations in terms of the average cost per hour of services. It was STIL's task to estimate local governments costs for the home help services and to convince politicians to pay this amount to STIL. In order to avoid having to renegotiate every year we suggested to tie our price to the national labor cost index.

(22) www.independentliving.org/docs5/ratzka199301.html

(23) In one case a member, mother of four, claimed that she did not have enough assistance hours to adequately take care of her children. As a result, the Social Services Office prepared formal steps to relieve her of the custody of her children. At this point, the STIL community - some 50 persons - stopped the traffic for half an hour in front of the office during their board meeting in the middle of rush-hour on a Friday afternoon. Our member was able to keep her children and, a few months later, had the hours she needed.

(24) Quoted in G. Anden, I. Claesson Wästberg, V. Ekensteen, "Personlig Assistans", Larson, Täby 1993.

(25) Labor unions have often taken a conservative position when it comes to de-institutionalization which might be due to the greater difficulties they have in defending their members' rights in community-based settings.

(26) In cluster housing workers rush from one resident to the next helping them get up in the morning which involves repeating lifting. STIL assistants, on the other hand, typically work for only one employer, which limits the number of physical lifts. Also, STIL members having control over who is to work for them can invest time in properly training their assistants in the use of lifting devices. STIL assistants' work is diversified consisting of many different activities throughout their employer's day. In this way, the evaluation noted, assistants gain insight in the importance of their work for the life-style and activities of their employers which contributes to job satisfaction.

(27) Service delivery under private or cooperative ownership supervised by local authorities and financed with local tax funds

(28) The common term "social" model of disability, in my view, can easily be misunderstood in non-Anglo-Saxon cultures where "social" in everyday language is seldom used in the sense of pertaining to society (examples are "social order", "social contract" or "sociology") but is often linked to social welfare (examples are "Ministry of Social Affairs", "social misery" or "social worker"). Given these connotations the term "social model of disability" could be mistaken for a humanitarian approach and there would not be much difference in referring to disabled people as medical cases or as social cases.

(29) Assistants or, more frequently, relatives and sometimes cooperative staff who have the respective member's trust to represent his or her interests.

(30) The local government wanted to integrate our scheme into their regular administration as a branch of the social services office. They offered us free office space and the salary of an administrator in addition to paying our personal assistants' wages. We were not tempted, since we realized that by controlling our administration, the local government would also dictate activities, growth and direction of our movement. Instead, we insisted on a flat price for each hour of personal assistance we produced, a price that was to cover all our costs including wages, administrative overhead, training and development work. We wanted to run our business on income from sales and not on government grants.

(31) The subsidies have a ceiling allowing only low wages. Also, the rules have undergone changes as to the maximum number of years during which funds can be used by employers for one and the same person.

(32) STIL was, as far as I know, the first personal assistance user cooperative. In Derbyshire, UK there existed a cooperative a few years before STIL where users and assistants together were members on an equal footing. The solution, however, did not seem to have taken off. (personal communication by Maggie Davies, Derbyshire 1989)

(33) Peer support means to share the fruits of one's experience. This principle was used by STIL in many areas of personal growth. For example, in our group sessions members were encouraged to identify life aspirations and to come to an understanding of how personal assistance could help them in achieving these goals. In the sessions only personal assistance users were present to share their issues, insights and solutions.

(34) Learning through the example of a person with whom identification is possible and thereby indirectly receiving encouragement.

(35) "Solidarity", often used by the Swedish disability movement, sometimes seems to connote that no one should be better off.

(36) Home of GIL, the Gothenburg Cooperative for Independent Living see www.gil.org

(37) ith Threshold (www.kynnys.fi ) under the leadership of Kalle Könkkölä

(38) ith ULOBA, Norway (www.uloba.no)under the leadership of Bente Skansgård

(39) see the German IL movement's news service at www.kobinet-nachrichten.org

(40) http://user.online.be/~indliv.vlaand/index.htm

(41) the hub of the UK movement is the National Centre for Independent Living at www.ncil.org.uk

(42) ith mainly the World Institute on Disability www.wid.org under its founders Ed Roberts and Judy Heumann

(43) through the Japanese Council on Independent Living Centers at www.j-il.jp

(44) G Anden, I Claesson Wästberg, V Ekensteen, op.cit. p. 16.

(45) Briefly described in www.independentliving.org/panetwork/questionnaire.html

(46) www.independentliving.org

(47) www.stil.se and www.gil.org

(48) For a description (in Swedish) see www.independentliving.org/docs1/taxi1.html

(49) Ms.Judy Heumann, Assistant Secretary, Dept of Education, Washington; Mr. Jerry Nkeli, Human Rights Commissioner, Rep of South Africa; Prof. Colin Barnes, University of Leeds, UK; Dr. Federico Montero, Costa Rica; Mr. Kalle Könkkölä, Ministry of Social Affairs, Finland; Prof. György Könczei Budapest University of Economics; Ms. Lydia Brichtova, Ministry of Social Affairs, Rep of Slovakia.



Parts available in English from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." ("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDFPDF, 1.46 MB).

 

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