Opinion: use of language in health and social care

Depersonalised by terminology

The jargon currently used in the health and social care sector is largely tailored to the professionals; positioning power with the 'experts'. Often terminology is used that is far over-medicalised for any member of the general public to understand. The sector’s true experts are the people receiving support to live their lives; power should be placed in their hands to develop a sector catering for their every need.

The state of language in this sector, both verbal and written, poses a huge challenge for people who require support. Many words and phrases automatically label individuals and imply that they are segregated from today’s society. It is paramount that this is transformed to open up a society, accessible to all, and whereby the person is identified before his or her requirements. He is not an epileptic; he is a person with epilepsy. She does not take the 'special bus' to get to work; she should be able to use public transport that is accessible to all.

Too much current language assumes dependency, passivity and incompetence. In the days of the institutions people were written off as lunatics, cripples and idiots. More recently people have been defined in relation to services as 'users'. With the personalisation agenda pressing on, it is critical that steps are taken to listen to individuals requiring support to agree a language that is based on the principles of self determination and rights. People are not 'invalids', 'service users' or 'clients'; as this assumes that they cannot function without care. People with disabilities have the same rights and expectations as any other human being; the difference being that they require support to aid an independent lifestyle.

A person-centred focus

Christine Squires, who has been using social care services for 31 years explained to me recently: “People’s attitudes, not only in the health and social care sector, but the general public and media too, must change; the adoption of a more positive approach to supporting people rather than identifying problems and disabilities is central to progress within the sector.

Language used can be extremely patronising; I am not 'handicapped', nor am I 'wheelchair bound'. I am an individual that requires support to live my life. I am a wheelchair user; a device that aids daily living, not one that I am bound to, to sleep, eat and live in.

“It is my personal assistant that helps me complete daily tasks such as opening cabinets above my reach or making my bed in the morning. She is not a form of 'home help', nor is he my 'carer' but an assistant that helps me retain my independence.”

The transformation we are looking for requires a successful collaboration between the experts — the people and families requiring support, and the professionals in both the public and private sector. We must look to a future that provides dignity, well-being and independence for all receivers of social care support.

The sector must put people first and language needs to be developed in a person-centred way that respects the dignity of the individual receiving support. People need to feel that they are in control of their support, and therefore are self determining the kind of life they lead.

Removing barriers to inclusion

Addressing modern day language is about more than just words; it is a culture change that is required. This will not happen overnight, nor will it occur through just one or two individuals committing to change; this issue is one to be transformed by all concerned; the general public, the media, the professionals and the people requiring support.

Let’s look at several aspects of the definition of social care; it aims to improve the lives of people, groups, and societies; incorporate other social sciences as a means to improve the human condition and positively change society's response to chronic problems. Social care is a profession devoted to the development of the full potential of each individual in society.

The sector is about enhancing the quality of lives of others, whilst making a positive change to today’s society. Ultimately, the transformation of the sector is about equal citizenship, one that is inclusive to all. The term ‘integrating’ is insufficient as this implies that one is coming in from the outside. We are looking for inclusion; a sector that allows people to participate in society, from the start, as an equal citizen.

Rosemary Berks, service co-ordinator at Darlington Association on Disability, explained to me; “We are not people with disabilities; we are disabled by an unequal society. Language is something that I feel very strongly about and something that, at times, can be very powerful and therefore should not be underestimated. Individuals are too quick to assume and issue labels; labels are for jam jars not for people. I am not a cripple or a spastic, nor am I an invalid — I am an individual with a visual and cognitive impairment. What do I want to be called? Rosemary, thank you.

“The term 'invalid' means worthless, null, void; in-valid. We are not invalids; we are people who require support to live our lives; not ‘care’ but ‘support.’ Although appropriate terminology is key for a better future, more importantly it is about being equal and removing barriers to inclusion.”

Sam Newman, Personalisation Programme Director, OLM Group.

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