In this section, we look at some of the key terminology as it both reflects and influences how we make sense of disability. Several factors influence the way we use language, such as:
the context,
the mood or atmosphere,
feelings about the topic
the level of comfort with the topic,
traditions,
beliefs and
linguistic norms.
When we hear or read something, we engage in a process of interpretation. We look for cues to interpret what is meant. These cues are often constructed around common sense assumptions and expectations about the world. We are not generally aware of these and consequently, not always in a position to question or challenge them (Garfinkel 1967, Fairclough 1995).
It is therefore important to be conscious of the terms we use when communicating about disability. We need to be critically aware of the potential implications of the use of various terms. We also need to look at the big picture, namely 'discourse', which is not just about grammar and words, but about meanings. A term, such as people with disabilities, can represent very different meanings and values, depending on how and by whom it is used (Chadwick 2000).
Impairment and disability
In section 4.2, we look at different meanings associated with the terms impairment and disability in the context of the different models of disability. The United Nations Convention on the Rights of Persons with Disabilities (CRPD), for example, is often considered as reflecting the social model of disability. It states that disability results 'from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others'. In the Appendix, we have provided translations of 'impairment' and 'disability'. Wherever possible, we have used translations of Article 1 of this convention from http://www.linguee.com and more specifically, selected translations from documents available on http://eur-lex.europa.eu In France, Spain, Finland and Germany, for example, the words for disability are handi- cap, discapacidad, vamma and Behinderung and the words for incapacity are incapacité, deficiencia, toiminnanrajoite and Beeinträchtung, respectively.
We then asked for feedback from our national member associations about the accuracy of the translations. Some suggested alternative terms, explaining that they were more common or appropriate (e.g. in Spain, Greece, Poland, Belgium and Italy). In some cases, back-translation revealed an overlap between meanings and the existence of additional terms. According to Knoll (2012), confusion and controversies over the distinction between disability and impairment also exist within the disability rights and disability studies movements.
Disabled people and people with disabilities:
Similar disagreement exists about the terms 'disabled people' and 'people with disabilities'. People often use these terms interchangeably. Within the disability movement, the term 'disabled person' is quite common and associated with a political message, namely that people are disabled by society. This takes the main focus off people's impairments and challenges the assumption that people with impairments are 'the problem' (Morris 2001). Perhaps it also implies that they are 'passive victims' of society.
The term 'person with disabilities', on the other hand, emphasises something that people have (i.e. "impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others" – just as they might also have a degree in chemistry, brown hair, an interest in gardening or dementia).
Whilst many people use the two terms interchangeably, some people and organisations have a preference for one or the other. One possible reason for preferring the term person or people with disabilities is that it puts the person before the disability. Such 'people-first-language', it is claimed, helps avoid dehumanising people. Rather than reducing them to a condition, it emphasises that they are first and foremost a person. This is somewhat similar to using the term 'a person who stutters' or 'a person with schizophrenia' instead of 'a stutterer' or 'a schizophrenic'.
Kapitan (2017) argues from a 'person-first-perspective' that people who have an actual condition or disability should be the ones who determine which term is used.
At a recent Public Affairs meeting, organised by Alzheimer Europe, representatives from 17 national Alzheimer associations all indicated a preference for the term 'people with disabilities'. Members of the European Working Group of People with Dementia (EWGPWD) and their carers/supporters did not have strong objections to the use of either term although the meanings they associated with each term varied considerably.
The term handicap exists either alongside other disability-related terms. It is the main translation for disability in some countries (e.g. in Romania, Denmark, the Netherlands, Norway, Belgium and France). In 1980, the World Health Organisation (in the International Classification of Impairments, Disabilities, and Handicaps) defined 'handicap' as follows:
"concerned with the disadvantages experienced by the individual as a result of impairments and disabilities; handicaps thus reflect interaction with and adaptation to the individual's surroundings" (World Health Organisation 1980).
The term is sometimes considered derogatory (and is viewed as rather old-fashioned). This seems to be based on a common misunderstanding that it originates from "cap in hand" and from an association with begging (conjuring up images of people with disabilities having to beg for a living). Its origin, however, reportedly comes from a 17th century game based on bartering called 'hand in cap'. From the late 19th century, people started using the term in connection with horse racing whereby a stronger horse would be rendered more equal to the others by putting weights under the saddle. Finally, in the 20th century, the term was used first in relation to children, and later also for adults with disabilities (Snopes 2011).
Official definitions of disability
Whilst definitions of disability are often based on models and theories, they specify the properties of disability or the characteristics of people with disabilities, rather than having an explanatory purpose (Chadwick 2000). Consequently, certain national, European or international definitions may serve to classify who does and does not have a disability. This may have a considerable impact on people's lives (e.g. by determining who has access to services and support).
In the United Nations Convention on the Rights of Persons with Disabilities (CRPD), in addition to the definition of dis- ability (mentioned above), article 1 states:
"(p)ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others".
In some countries, however, the International Classification of Functioning Disability and Health (ICF), adopted by the World Health Assembly in 2001, is used as a means to assess disability status. In such cases, the latter might be considered as providing an authoritative statement about what disability is. To some extent, this is based on perceived norms and departures from those norms and on what 'accommodations' (changes to prevent discrimination) are considered appropriate. This neglects, to some extent, individual perspectives and collective experiences (Altman 2001, reported by Knoll 2012). Some of the models of disability described in section 4.2 reflect elements of these two approaches to disability.
As can be seen from the above summary of definitions and terminology related to disability, people use a range of terms for different purposes and in different contexts and documents. Chadwick (2000) emphasises the importance of having a mechanism to review various definitions (especially those enshrined in laws and policies). This, he suggests, would help ensure that they continue 'to correspond with disabled people's own perceptions of their relationship to the social environment' (p.8) and perhaps equally important to ensure that they are in their interests and can incorporate self-definition.
— The meanings associated with different terms may change over time.
— Definitions, translations and official classifications reflect a particular dominant discourse.
— This discourse is open to challenge and change; it reflects the historical and cultural evolution of words, as well as political concerns.
— The extent to which the use of various terms and definitions is amenable to change may differ depending on the authority of the people or organisation behind them.
— In keeping with the claim of the disability movement "Nothing about us without us", we need to ensure that people with dementia contribute towards the ongoing refinement of disability-related terms and challenge them when needed.
Last Updated: Tuesday 13 February 2018
The discussion paper "Dementia as a disability? Implications for ethics, policy and practice" received funding under an operating grant from the European Union's Health Programme (2014–2020).