What Disability might mean

The problem is not only that a great variety of different phenomena are to be subsumed under one concept. There is even a fundamental scholarly controversy, what exactly the concept should relate to: should the definition of 'disability' essentially be about health issues individual people are dealing with – in other words: individual deficits? Or should social circumstances – especially obstacles to participation, and discrimination – be of primary importance?

The boundaries between “healthy" and “ill/ diseased" are not always easy to determine. Who should be allowed to define the underlying criteria and concepts of “normalcy"? In response to such questions as these, several models of disability have been developed. They broadly fall into one of two families.

The medical model (also known as “personal tragedy" model in the English speaking world) and other “individual" or “deficit oriented" models, typically assume that an impairment of health which  is relevant in everyday life – i.e. a significant and lasting disruption of mental or physical health  on the part of the individual  – is the root cause of disability. This implies that the state of the individual disabled person is seen as problematic, as needing treatment, or otherwise regarded in a predominantly negative way.

Social and cultural models of disability form a “family" of disability models (according to theorist Tom Shakespeare) with very diverse, and at times divergent, members. In stark and principled contrast to the medical model of disability, they do not locate the cause of disability within the individual, but root it in the social system and the culture it entails.  Central to such approaches is a clear distinction between the individual impairment and the disability that results from society's interactions with that characteristic. 

The theoretical sources they employ and their focus differ widely.  Accordingly, you will encounter a variety of models from this group in the debate, each coming with their own key concepts, names and labels. These models originated in the emancipatory social movements of people with disabilities, which entered the stage in the 1970s.

In sharp contrast (and in direct opposition) to the medical model, they do not locate the source of disability within the individual, but within the social system and the culture it entails.  The crucial factor deciding which of the kinds of states and conditions an individual might find itself in – i.e. which specific "functionings" of body and mind -- count as disabilities is the social reaction to an individual's individual features. If a society fails to adapt adequately to a certain feature and thus does not accommodate people with/in a certain condition properly, a disability results. Disability, according to this approach, is the result of social exclusion and discrimination, which turns an inherently harmless characteristic – a “mere difference" (E.Barnes) – into a disability.

Especially in the area of mental health, the 'impairment' is not considered a health issue by all groups of (potentially) affected people. The paradigm of neurodiversity, which has been gaining traction over the last two decades, supposes a given human diversity of neuro-cognitive functioning. Pathologizing concepts such as 'disorder' (as in autism spectrum disorder) are accordingly criticized as instances of 'othering', implying a contrast to an assumed notion of normalcy. 

Some of the people described as 'mentally ill' repudiate terms such as 'mental disorder' und criticize primarily society's reaction to their situation of life and the social reactions to psychological crises in established systems of support and treatment. Consequently, a variety of alternative terms are being proposed. Also, the so-called 'trialogue', a format including affected people and their families in psychiatric processes, is being advocated.

This approach relies on two pillars: 1.) The critique of society and its structures plays a crucial role, as the models emerged from social struggles against discrimination, stigmatization, segregation and exclusion. Thus, the approach inherently demands social change – this is the reason why it was conceived in the first place. If society as such were sensitive to the characteristics (or: peculiarities) and needs of all its (fundamentally equal) members and accommodate them, why should anybody still be “disabled" or impaired in leading their lives? Why should people not be able to use the positive features of what “disables" them today – currently conceptualized as “compensations" in medical terms – and reap the benefits? If one sensory modality is blocked, for example, the other senses may be sharpened; a psychological issue might alert a person to the needs of others and facilitate closer connections between persons, to hint just at the most familiar effects of this kind. 

Furthermore, this approach relies 2.) on the conviction that it is possible to build a society (or a social world), such that all human persons across the entire range of their diverse physical and mental constitutions may live together as equals without any special impairments and grievances to prevent them from joining the joint social venture. Whether psychological or physical issues may still count as “causes" of disability under such premises is a matter of extensive debate. If such an act of “remodeling" (M. Oliver/ V. Finkelstein) society is coherently conceivable – without internal contradictions – is likewise both a complex and a highly contentious question. Is there any social practice that might ever have the strength to (practically) realize this conception? Moreover, the concepts of “society", “(human) rights", “state" or e.g. “culture", employed within this discourse vary immensely: this diversity eventually gives rise to a family of models conceiving of “disability" in  some “social" way. 

Social and cultural models of disability are thus closely linked to the disabled people's movement. A more “medical" approach has for many decades dominated the view of disabled people within both the social welfare and the medical systems. In how far the “medical model" can after all be really attributed to “medicine" as such is contentious – not least because of the wealth of methodological approaches used within medicine itself, and because various “social" factors do play a part in “medical" thought and action. 

This is not the place to suggest a final evaluation of the different (and often conflicting) perspectives of disability. A fuller view of the issues under debate and an elaborate argument is required for that.

Modern models of disability regularly comprise both socio-cultural and health-related / medical  factors. They aim for some middle ground between the extremes laid out above – arguably with considerable success. An influential model established by the World Health Organization (WHO) pursues as an approach comprising three levels: It assumes that disability goes back to a considerable impairment of health (1) which restricts the ability to act (2) of the people affected by it and thus limits their opportunities for equal participation in society (3). These three factors together are taken to cause disabilities. 

The differentiation between “disabled" (behindert) and “chronically ill" (chronisch krank) – in itself a technical term in need of further clarification – implies further conceptual issues of its own. Experience from practical counselling and advocacy work in a university context suggests that many people prefer to describe themselves as “chronically ill" rather than “disabled" anyway. To a smaller degree, the opposite may also be the case for some. Analytically speaking, most concepts of disability rest on the notion of a lasting “disease/illness" (Erkrankung, Krankheit).

For much of the work done at a German university, the legal definition from Social Law, which by now essentially mirrors the definition given in the UN CRPD (UN Convention on the Rights of Persons with Disabilities). It asserts that disability is an evolving concept and goes on to define the term “persons with disabilities". In this definition, the conception recurs to both social and individual features and the notion of an “interaction" (Preamble, lit. e) between persons with disabilities and barriers in their environment, which is not elaborated any further.

To engage with the issue of conceptualizing “disability" and the debates surrounding the concept may yield various practical consequences and even influence your personal approach to your own way of life – whether you are living with a disability or not.

It is not the proper task of Goethe University's Team Inclusion to attempt at a conclusive verdict concerning the conflicts and debates sketched above. As members of the university administration, we primarily apply the pertinent legal definitions. Furthermore, we strife to consider the different perspectives on disability, its causes and consequences in a reasonable and equitable way.

• Essay and conceptual reasearch: Christoph Trüper
• Review and elaboration: Mirjam Kreuser