Let’s Get It Clear: Keeping up-to-date with terminology
Are the terms that we use in our professional lives clear, understandable, and acceptable, or are they lazy shorthand or even offensive? What should we be using and not be using?
In this article we will look at terms we use today and also some that had been in use at one time, but have changed since, and why this has happened. In the medical world we have our own jargon, but is this to avoid offence, or just to show that we are insiders in an ‘elite’ group? How should we refer to, or converse with, our clients? Have we become too ‘woke’ and therefore end up in unhelpful verbal contortions to avoid offense?
Let us start with an example: ‘Invalid Carriage’. The only place where this term is still used is in UK legal terminology, and because this written into laws there it sticks. An invalid carriage is “a small, lightweight vehicle designed for one person with a physical disability, allowing them to travel on roads/pavements without a licence”.
The term has long been associated with the Ministry Blue coloured microcars (Figure 1) which were supplied free of charge by the UK government to people with disabilities from the late 1940s to the 1970s. Early models used a 197cc engine, with later models upgraded to a 500cc or 600cc engine. Production ceased in 1976, and the last remaining government-owned models were recalled and scrapped in 2003 due to safety concerns as other road vehicles around them became larger and more powerful.
Today the legal term covers any vehicle (under a specified unladen weight) built for the use of a person with a disability. The vehicles are classified by speed and power:
- Class 1:Manual wheelchairs
- Class 2:Powered wheelchairs/scooters (max 4 mph, pavement use)
- Class 3:Faster scooters/powerchairs (max 8 mph, can be used on roads, but must slow to 4 mph on pavements).
Obsolete terms
Looking elsewhere – medical illnesses were often described based on their symptoms, their most obviously observable effects, or named after their ‘discoverer’. These have been replaced due to better understanding (e.g. Dropsy, which was replaced by oedema as we understood the underlying fluid buildup, Apoplexy by stroke, etc); by scientific progress (e.g. ‘Infantile paralysis’ became Polio, and ‘Bright’s disease’ was respecified as kidney disease); or avoiding stigmatization (e.g. French Pox for syphilis).
Death certificates may have had a more euphemistic reference: in the 19th century, it was estimated that a third of adults in London had syphilis, and this led to the death of many of their children, where their death certificate recorded the result, namely marasmus (i.e. wasting), rather than the cause, due to the social stigmatization that attached to syphilis.
When I was at school in the middle of the last century, frequently one would see collecting boxes for the Spastics Society (Figure 2) outside shops, at a time when polio was still endemic. A derogatory term at the time was to be called a ‘Spaz’ if one was not physically agile. The Spastics Society was a major UK charity, founded in 1952 for people with cerebral palsy, that changed its name to Scope in 1994 because the word ‘spastic’ had become offensive and outdated, and at the same time shifting focus from a single condition to supporting all disabled people and challenging attitudes towards disability.
A number of diseases were named initially after the doctor who discovered important features of the disease. A good example is leprosy. This highly contagious disease and disfiguring bacterial infection is known as Hansen’s disease after a doctor from Norway, Gerhard Henrik Armauer Hansen, who discovered in 1873the microbe, Mycobacterium leprae, that causes it. There are countless other examples such as Parkinson’s disease, Huntington’s chorea, Colle’s fracture, Cobb angle, Cock’s peculiar tumour, etc.
Jargon
For speed, and also to show that we are “in the know”, we sometimes resort to jargon and acronyms. The danger is that the same acronym can mean something different to different listeners. After all, BHTA also stands for BioHazardous Threat Agents, as well as Barbados Hotel and Tourism Association.
Around Covid and government procurement of Personal Protective Equipment, we were all well aware of the acronym PPE. But when I was in further education, PPE stood for Philosophy, Politics, and Economics – the degree course followed by many of our politicians! To others, in the construction industry, PPE stands for Property, Plant, and Equipment.
On medical notes, sometimes the patient is better of not knowing! For example NBM (Nil by Mouth) may be OK, but what about PAFO which is short for Pissed And Fell Over, UBI for Unexplained Bar Injury, TEETH for Tried Everything Else Try Homeopathy, LOBNH for Lights on But No-one at Home, PRATFO for Patient Reassured And allowed home, and TTFO for Told To go home?
Dignity
When we are working with the people who are our customers, or who are visitors to clinics, how do professionals treat these people with respect as individuals and as human beings rather than ‘objects’, but also being clear about to whom we are referring? When working in the wheelchair world, to whom are we referring when we use the term ‘user’? The wheelchair standard on terminology (ISO 7176-26) recommends the term ‘occupant’ for the person in the chair, and ‘attendant’ for the carer, helper or support person.
These days we avoid the terms ‘obese’ or ‘bariatric’ in favour of ‘plus-sized’. We use ‘older person’ rather than ‘geriatric’. Often ‘client’ is substituted for ‘patient’, and these individuals are now referenced as being ‘concordant’ rather than ‘compliant’.
With the shift to promote dignity and reduce stigma, we now focus on the person rather than reducing them to a diagnosis or condition, aligning with person-centred care principles. Thus someone should no longer be labelled with titles such as “anorexic”, “schizophrenic”, etc, but as “a person with anorexia”, “… with schizophrenia”, etc. Rather than referring to “the blind”, refer to “blind people” or “people with sight loss”. Much longer phraseology, but separates the person from one aspect of their being.
Disability
The term ‘disabled’ is used lazily and has negative connotations. I’ve been offered, apologetically, the ‘disabled room’ in hotels, when all other rooms have been booked. The room was not disabled, and in fact was easy to get to on the ground floor, and had more space than a standard room. We should be at a minimum be referring to the room as being ‘accessible’, or as a room adapted for use by a person with a disability. Interestingly, since it’s the majority of people, including myself, who need glasses or contact lenses, nobody refers to us as being disabled! We are enabled by the technology on offer.
For children, we should take care around using the term ‘disabled’. They do not necessarily know that they have a difference from their peers, at least until they are told repeatedly by teachers and other adults that, with negative connotations, that they are disabled, and in doing so become brain washed. But being different in one arena does not mean that you cannot be a great success in another.
Last year the BHTA was instrumental in helping to get the All Party Parliamentary Group (APPG) for Access to Disability Equipment set up. It was a shame that our society is still at the stage where calling it the APPG for Access to Enabling Equipment had less appeal. Despite my quibbles about its title, it’s a fantastic initiative, and its initial recommendations will be of great value if achieved – these are to:
- Develop a National Strategy for community equipment
- Reform funding and commissioning to focus on quality
- Reduce waiting times
- Improve communication and transparency with families and carers
- Create a National Advisory Board
- Strengthen reuse and recycling systems
Assistive products
What examples do we have of updated terminology in the arena of assistive products? In the world of skin health we used to have ‘bed sores’ that got renamed as ‘decubitus ulcers’. ‘Pressure ulcers’ became more acceptable, and then with the increased scientific understanding of the causes of skin damage being equally contributed to from friction, shear, and microclimate, in most of the world (except Europe) ‘pressure injuries’ has become the preferred term.
The terminology standard, ISO 7176-26 (referred to earlier), has provided preferred terms (with their definitions) to try to encourage everyone to use the same term for what has been a plethora of sundry names. An example is anterior support. The following is the list of deprecated terms: anterior head strap, forehead strap, forehead support, headband, knee block, knee strap, lap belt, pelvic stabilizer, pelvic strap, safety belt, seat belt, sub-ASIS bar, backpack strap, shoulder bar, shoulder hook, shoulder retractor, shoulder strap, anterior thoracic support, butterfly strap, butterfly harness, chest harness, chest strap, H-strap, harness, spiderman strap, Y-strap, humeral strap. The term can be qualified by stating which part of the body against which the support is placed – e.g. anterior trunk support.
While on the subject of support, the same standard deprecates the use of ‘rest’ for parts of a chair or seating system which actually have a functional role, such as a back support, arm support, foot support. By using the term ‘support’ which implies an active function for the item, a more appropriate product hopefully might be selected, and more thought applied to its placement.
Language is evolving continuously and is our major means of communication. It works best when the chosen wording means the same to the recipient as the transmitter, and vice versa. We just need to keep up with the flow.
Further reading
ISO 7176-26:2007, Wheelchairs — Part 26: Vocabulary
APPG Website: www.appgdisability.org
https://www.verywellhealth.com/outdated-disease-names-2615295
https://theconversation.com/nine-medical-terms-we-should-get-rid-of-according-to-a-doctor-93881
https://journalofethics.ama-assn.org/article/derogatory-slang-hospital-setting/2015-02
https://blogs.bmj.com/bmj/2017/04/07/tessa-richards-words-that-annoy-phrases-that-grate/
Further items can be found at www.beshealthcare.net. If you are interested in receiving further information on the topic, please contact 
barend@beshealthcare.net.
Dr Barend ter Haar has been involved in seating and mobility for over 30 years, including lecturing internationally and developing international seating standards
