Care and personal assistance – the difference. Against the backdrop of practice in Germany
Confronting and Challenging Ableism Together
Assistance and care are never neutral: they are embedded in social structures of power and discrimination. A central problem here is ableism – the expectation that disabled people should conform to a supposed norm.
Ableism shows itself, for example, when:
- someone is denied the ability to know what they want for themselves,
- standardized routines are treated as more important than individual needs,
- assistance users are seen as mere “objects of help,”
- or assistants are reduced to a mere “function.”
That is why it is not enough to distinguish only between care and assistance. Both fields can actively reproduce ableism if we do not confront settings altogether. Family members, staff, and assistance users need to join in solidarity: listen, reflect critically, think together, and actively dismantle barriers.
Historical Background
The idea of personal assistance [1] – in English various do describe this function – is closely linked to the history of disability rights movement. In the 1970s, young disabled people in the United States gathered in the Crip Camps, where they together developed the awareness that the problem was not an impairment itself, but the barriers created by society. Out of these experiences grew the demand for self-determination and opposition to institutionalized control – a core principle that continues to this day. This movement initially mirrored itself in Germany most noticeably in the self-declared “Krüppelbewegung”.
Care
- Focus: basic needs – personal hygiene, food, medication, mobility.
- Structures: duty rosters, standards, routines.
- Often the system decides how and when support takes place.
Personal Assistance
- Focus: self-determination – the supported person decides who helps, when, and how.
- Encompasses not only – and not necessarily – care, but all aspects of everyday life.
- Goal: not only safety, but participation in life – and not as adaptation, but as the realization of one’s own co-creation of society, one’s own contributions to civil society, etc.
A Connecting Thought
The social psychiatrist Klaus Dörner emphasized that care, too, should be shaped in a way that functions more like assistance. He pointed especially to the possibilities that exist in community-based contexts. Support must be oriented toward the wishes of the person receiving it. So it is not about two separate worlds, but about making support overall more self-determined and less ableist.
For Staff and Family Members, This Means:
- Listening and taking seriously what the person wants.
- Thinking with them instead of steering.
- Staying flexible, even when it doesn’t fit routines.
- Understanding support as acting with the assistance user, not acting “for” them “on their behalf.”
👉 Personal assistance is therefore not simply “care plus,” but a different attitude – and it only becomes truly emancipatory if we actively recognize ableism in everyday life and overcome it together.
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In Germany, for instance, the ideas of the disability rights movement have been taken up but often only in a fragmented and standardized way. High levels of bureaucratic regulation attempt to translate activism into procedures, but activism cannot simply be taught or administered—especially in a society still permeated by ableism. What has emerged instead is a growing market: care and assistance are increasingly offered by service providers who want to make money, while bending the laws to their own operational needs. The ethos of personal assistance, however, often gets lost in this commercialization, and society at large does not create its own critical understanding of assistance relationships. The only path forward remains that assistants and assistance users must stay active and alert in the spirit of empowerment—resisting ableism together. This also means confronting classism, since precarious living conditions affect not only those receiving state support, but also many of those working in assistance jobs.
Ultimately, it depends on everyone—no matter their position—to act on the basis of their own possibilities. Whether as a service provider, an assistance user, an assistant, a relative, or a politician, each person has a role in shaping how assistance is lived and understood. The responsibility is not limited to one group: genuine empowerment and the dismantling of ableism require contributions from all sides, grounded in awareness, solidarity, and the refusal to reduce assistance to mere procedure or profit.
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Further References
- Prof. Dr. Dr. Klaus Dörner: De-institutionalization in the Light of Self-Determination and Self-Surrender – Intentions, Insights and Prospects Along the Social Question → PDF [29.09.25]
- Contributions on personal assistance at simorgh.de → Category “Personal Assistance”
- The framework set out in Book IX of the German Social Code (SGB IX) makes sense and should not be understood only in fragments. See: § 78 SGB IX – Assistance Services.
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[1] in English the comparable social function is named with various terms; in Germany currently we have Personal Assistance in the public, regulated nonprivate sphere, a.) as framed by basic social law, while in practice recently functionally yet slightly unrealistically divided into two chapters that b.) work the practice and contribute to causing a mess > of which one is typically assigned to qualified social workers, who are supposed to mirror the participatory goals of a person using assistance, and the other chapter, which is considered to help with all daily routines (and tasks that typically “parents would do” in the case of younger people […]). And on the other side we have the care taking sector which mostly targets the elderly, which is highly structured via law and the practices of service providers, to cut a long story short.