Solidarity networks: between self-determination and the new obligations of an aid society
By Thomas Birk
1. Individual freedom and new forms of community
There are currently two trends in Central European urban society. First, remaining single is becoming more popular. The number of single households is particularly on the rise in large cities, although this desire for freedom is also accompanied by the threat of loneliness. Factors such as increased rates of divorce and separation, increasing childlessness, the physical separation of families due to the needs of the labour market, flexible residency, and longer life expectancy, often result in family members or former partners living alone. This particularly applies to the elderly and people who find themselves faced with crisis situations or illness.
Second, the traditional family structure is increasingly falling apart. As a way of counteracting the ‘society of the single’, different models of collective living are now being tested or have already become common practice. These include patchwork families, rainbow families, chosen families, networks of friends, alternative forms of living, multi-generational housing projects and settlements, and shared apartments with or without additional support and care.
2. Safeguarding diverse ways of life
If diverse ways of living are to be encouraged family, partnership and mutually supportive communities must be strengthened. The family and solidarity contracts currently being discussed by Bündnis 90/Die Grünen provide examples of how this could be done. The family contract is aimed at safeguarding parenthood based around more than 2 parents such as is often found in LGBT parenting and patchwork families. Whereas the solidarity contract is aimed at people without children or individuals who live together but not as partners, such as is the case in multi-generational housing.
Family and solidarity contracts would safeguard children’s and parental rights and set out the duties of contractual partners. Yet a question that is rarely considered in the current debate is whether these contracts would also lead children or other contractual partners to be locked into specific obligations towards parents or other contractual partners in cases where long-term care is needed.
3. Developments in alternative forms of living and nursing care
Twenty years ago only two forms of long-term care provision were available. Either family members in the home took on a caring role (which generally meant wives, daughters and daughters-in-law) or the person in need was sent to a nursing home. Wealthy singles sometimes moved to specialised nursing homes which had their own care units, even before they needed long-term care. In contrast, low-income groups moved into state-owned retirement homes. Assisted living was introduced for the middle class in the 1980s. Today, a wide range of diverse alternative forms of care is on offer, and each form developed in its specific way.
3.1 Self-help in the wake of the AIDS epidemic among gays
The rise of AIDS in the gay community at a time when the community was beginning to gather momentum led to a care movement which was without precedent in the western world. At a time when being gay (plus AIDS!) often led to a breakup of families, young gay men, confronted with their own deaths or that of their friends, were simply left to their own resources. They formed self-help groups which had both a political impact and supported people living with AIDS. Twenty-five years later, these groups have become institutionalized networks but are now threatened with a loss of influence due to their professionalization, and developments in AIDS.
3.2 Queer forms of living and nursing care for the elderly
In the light of these challenges, the gay and lesbian community has been discussing how the generation which gained self-confidence through emancipation and is now close to retirement would like to live in old age. Whereas some smaller lesbian housing projects proved successful, the first attempt at establishing a queer care unit in a nursing home in Berlin-Pankow failed. Large gay housing projects have also suffered a similar fate, as they are rarely welcomed by the generation that grew up during or after the Second World War.
Consequently, the first fully-funded major project of its kind, the Regenbogenvilla in Berlin-Charlottenburg, is awaited with excitement. It is hoped that this project will provide accommodation to more than sixty mostly elderly gay men and some women. However, in my opinion the future is not to be found in large projects but in housing communities and networks of volunteers.
3.3 Self-determined support and care in mental illness and dementia
Today, fewer mentally ill and elderly people in need of care are sent to large institutional care homes. During a period of de-hospitalisation in the 1980s and 1990s, numerous housing projects for people with mental illnesses were founded. These projects and the 300 or so shared housing projects for people with dementia are covered by a law in Berlin (Wohnteilhabegesetz) that came into effect on July 1st. However, the boom in shared housing for people with dementia could also threaten the self-determination of the people living in such accommodation. This is the case as some care providers have realised that providing housing to the mentally ill can be a lucrative business. It is then essential that family members, neighbours and volunteers actively participate in care to ensure that people living in shared housing do not end up living in isolation or lose their rights to self-determination.
3.4 Other alternative forms of living for the elderly
Multi-generational housing projects and shared housing for the elderly are mostly set up at a time when the (albeit elderly) participants are still quite active. As a result, the need for long-term care is often ignored. I am often confronted with the assumption that people living in housing projects are less prone to illnesses and are less likely to need long-term care. This might be true, but it need not imply that people who live in housing projects die of old age all of a sudden and in good health! Consequently, people living in housing projects must prepare themselves for situations in which someone might need long-term care. Future arrangements for the other occupants should also be considered. For example, the hospice movement has been growing over the last few years. Besides consolidated housing, hospice associations that offer out-patient hospice services are also worthy of a special mention.
4. The prerequisites for the success of innovative forms of living and care
Innovative, self-determined forms of living, and care assisted by out-patient nursing services can only guarantee better care and nursing if:
a) family members, legal guardians and carers, or third parties (particularly volunteers) guarantee their commitment;
b) professional networks consisting of full-time staff (care support units are not enough) support the volunteers;
c) financing is linked to quality (personnel deployment!);
d) and regulatory measures are set up to protect the rights of service users (residents). This is particularly important where c) has not been implemented.
In order to improve the framework supporting alternative residential projects, urban politics must be changed and the housing market must provide appropriate housing. Neighbourliness and self-help should be better supported.
In particular the generation currently between 40 and 60 needs to follow the approaches outlined above, but must also establish private networks of mutual support for when they become old or need long-term care. The traditional family has to be replaced by the chosen family as alternative structures rely on voluntary. With the exception of their employment in care, until now migrants have played no significant role in the developments described above. If this situation is to change, we still have a long way to go.
5. The long path to gender equality in the care sector
Support and care has been predominantly left to women. When men are employed in the care sector they take on management positions or take part in public debate. It is then exceedingly rarely for men to take on the practical roles of carers as volunteers, sons, husbands, partners or caring friends. This has its basis in traditional gender roles, age differences between men and women in relationships, women’s longer life expectancies and the low levels of pay in the care sector.
Most residents of care facilities or supervised housing communities are women as their partners have either died or are not willing to take care of them at home. Often women in need of care have left their homes after having nursed their husbands or partners at home. If gender relations in the care sector are to be improved numerous policies will be required and they will take several decades to implement. However, there is a slight positive trend: the report Möglichkeiten und Grenzen selbstständiger Lebensführung in privaten Haushalten (MuG III) notes a rise in the total number of assistants and carers from 17 % in 1991 to 27 % in 2002. However, although this figure might well have risen since the report was published, it tells us very little about the percentage of men employed in the care sector.
If the percentage of women in full-time employment increases in general, politicians will come under pressure to establish new relief schemes aimed at people who care for family members – these would also be accessible to men. Higher wages in the care sector would also make care work more attractive to men. At the same time, with fewer marriages taking place and less children being born, there are less wives, daughters and daughters-in-law available to nurse fathers, mothers and husbands.
The real question then is who will take on the role of carer in the future. Will it be female or male relatives, better paid care personnel with both genders equally represented, or will it instead be poorly paid, illegalised, female nursing staff from Eastern Europe or other countries who are deprived of all their labour rights. This essentially depends on the pensions available to the next generation requiring nursing care. In the face of enormous demographic changes, pessimists argue that the lack of private insurance to pay for nursing care will inevitably lead to a return to care provided in shared rooms as part of huge nursing homes for the masses.
If this is to be avoided, the problem must be tackled now. This then is one of the major challenges currently facing the baby boomer generation.