Language and Disability: a Dare-Learning Internal Project Guide
Author: Bernard Quinn, Director, Learning-Difference Limited, UK, June 2012
About this guide
The Dare e-learning consortium’s Quality Management Group (QMG) has commissioned this internal guide for DARE partners and consortium members. Its’ purpose is to enable existing, and future consortium members, to develop and work to an agreed common framework of disability language. This guide will be reviewed annually. Hopefully it will prompt further examination of the issues and sensitivities around the use of language in each partner country and beyond.
Aims for the guide
There are four aims:
• to be a tool for change within the consortium especially when inducting new members.
• to assist positively in the debate around disability equality and human rights within the consortium, and beyond – through members sharing their knowledge
• to be a living resource with members shaping its future content over the coming years.
• to support the consortium’s aims around respect and dignity for disabled people.
Why does a disability language guide matter?
‘Since individuals and social practices can cause injustice, how we treat and speak about others becomes a matter of justice’. (Bhikhu Parekh. A New Politics of Identity, 2008)
The way we use language is fundamental to how we shape and influence not only our perception of ourselves it also affects those with whom we come into contact in our daily lives. Language is both a powerful carrier of meaning and a very efficient carrier of misunderstanding. Even the same words used by different people can sometimes carry different values when used in different geographical, cultural and political contexts – for example words that are currently acceptable in the UK may not yet be acceptable in Turkey and so on. Language use, and abuse, is not a static entity. It changes with time, it changes with context, it changes with geographical location, it changes with individual and group intent – both good and bad. The evolutionary and organic characteristics of language, and of disability language in particular, are highly significant.
The way we use language around disability is constantly evolving and changing. This is for several reasons. Advances in medical science and medical technology in the last 30 years have transformed the way we understand and perceive, for example, dyslexia, autism, Asperger’s. Modern assistive and adaptive technology is challenging many of the arguments that were used against a disabled person choosing certain types of work or attending higher education. Politically there have been significant changes in the last 40 years with international, transnational and national legislation and policy initiatives to protect a disabled person against unfair treatment or discrimination. Because these are politically driven initiatives, they are vulnerable to change. The language is changing also because there more transnational cooperation projects, so country partners are learning from each other, exchanging understandings and values attached to disability language.
The explosion of the social media phenomenon with its mass audience, lack of borders and boundaries, is not only changing the way we use language it is accelerating that change. And it is changing who controls language development from the old order (academics, politicians, medical, media, and other professionals) to the new order by spreading it equally with everyone else, including disabled people themselves. It will be very interesting to see what research emerges in this area and if social media changes disability language in the way it is changing other aspects of our lives.
Many of the problems that persist with disability language do so because of this continuous change and because of the deeply entrenched political and cultural views that persist. Thus some words become obsolete and even damaging when used after a new understanding of a condition has been established. Sometimes a way of seeing disability, the medical model in particular, is so entrenched in a society it greatly inhibits change or progress and can divide opinion and people.
A simple example would be the word “dumb” when used to refer to someone who is profoundly deaf. In the early part of the 20th century in the UK it was commonplace to generically label all deaf people as “deaf and dumb”. The word dumb was originally used to denote significantly impaired speech or meaning “no speech”. However in the mid 20th century the word “dumb” became more commonly used to describe someone as being stupid or slow thinking or even incapable – “don’t be dumb” “why are you acting dumb?” One noticeable side effect of this change in the use of the word “dumb” was the subtle and powerful way it reinforced the common perception and presentation of deaf people as being inadequate compared to a hearing person and less capable of developing many skills to a high degree.
What disables most deaf people is not their hearing loss but the learning and employment environments they experience, and the ignorance and attitudes they often encounter.
There was a UK public awareness campaign “Deaf NOT Dumb” (started in the 1990s) led by the author of this article, to try to correct this perception and to show the damage that careless use of language can cause to people. This campaign focused on the use of language such as “deaf and dumb” and why it was wrong. It is now mostly accepted (if not universally practiced) that this term is outdated, inaccurate and damaging, and should not be used. If a deaf person really cannot use their speech organs or chooses not to use them, the generally accepted term is “deaf without speech”.
Working in a transnational project
In transnational groups such as DARE the differences in language used can also be a source of tension or misunderstanding between members. This is because although many of the words used around disability are increasingly the same or similar and are becoming more widespread in use, the meanings and societal/cultural values attached to them can vary from place to place. And so although there is a growing common disability language used across country boundaries, the understandings of what they mean in each country can still sometimes seem worlds apart – even in transnational project groups that are focused on disability matters.
Being careful with the language you use around disability is not about being politically correct. It is about human rights, respect and dignity. It is about being accurate and correct. Also, being politically correct is not a pejorative: it is being alert to the power of the use and abuse of language:
“To be politically correct is to be sensitive to the unconscious racism and sexism of words used widely both in society and academia.” (Frankfurt School of Sociology, 1920s).
Models of disability (and their effect on language)
The two main models of disability, the social model and the medical model, shape most people’s thinking and attitude towards disability. They also inform our decisions about the language and lexicon we use which can vary dramatically depending on which of the two models are being followed. It is therefore useful in this guide to remind ourselves briefly about these two models that have greatly influenced the language we use around disability and impairment.
There is still a debate about the detail of what the social model includes. If you ask disabled people or non-disabled people or professionals in the disability field of study, you may get very different opinions on this model. There is no doubt that the social model concept of disability has been important to the progress achieved in equalities, witnessed by the references to it in major policy and legislative decisions across much of the world e.g. UN Charter of the Human Rights of Disabled Persons and the UK Equalities Act 2010. Contrastingly, the medical model has not been credited with aiding progress in the same way. Nevertheless it still pervades much of our thinking and is still visible in the language used in governmental and intergovernmental policy, guidance, and Acts of parliament.
In the United States there is a third model, which could be described as being related to the social model. This is the so-called economic model of disability, which is framed by economics, state benefits, employment levels, and their impact on disabled people’s education, life choices and freedoms.
The Medical Model of Disability places the problem within the individual suggesting that only a medical or surgical cure will solve the ‘problem’. It can be used to deny the individual their value, worth and individuality as they do not meet the accepted ‘norms’ of our society. This model is related to the tragedy or charity (dependency) model and perpetuates how disabled people are often viewed in society.
The Social Model of Disability redefines disability as something outside the person whilst the impairment is a physical, mental or sensory functional limitation within the individual. It describes disability as the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. What is disabling is not the impairment but the barriers in the external environments.
Under the Social Model (which is adopted by most international civil rights disability groups) people have “impairments” they do not have “disabilities” per se. The term ‘disabled people’ was redefined by these groups to mean that the disabling factors are outside of the person with an impairment – it is the policies, rules, attitudes towards disability that create the barrier’s, it is the built environment and the persistent lack of knowledge about disability that allows for discrimination against disabled people to happen.
The language of disability is very well developed but it is also constantly evolving and varies across countries adding to the sensitivity of this topic.
What follows in the table below is a guide to acceptable and unacceptable language as defined in a broad range of sources: organisation policies and information (e.g. Disabled People International), government (e.g. UK Equalities Act 2010) and inter-government legislation (e.g. European Commission guidance), international agency policies and guidelines (e.g. United Nations articles and conventions on human rights), articles, disability organisations and consortiums (e.g. DARE), amongst other sources.
As has been said above, what is generally agreed now as acceptable disability language can change over time or be understood differently in certain cultural contexts. So be aware of this range of views and values across the world when you use language around disability and equality.
Myths and stereotypes
Using inappropriate language around disability can easily reinforce inaccurate and misleading ideas about disability to the point they become established in our cultural DNA. At this point they become manifest through the myths and stereotypes that have ben associated with disability.
• Myth (n): 'a story handed down through history, often through oral tradition, that explains or gives value to the unknown' - in this case 'disability'. Myths breed stereotypes…
• Stereotypes: groups of attitudes which have little or no basis in reality and yet persist in cultures. Stereotyping reduces the individuality and character of people to false social constructs.
By reading this guide, and the list of examples of language that you should not use, it should become clear what myths and stereotypes do exist in the language and how they can be damaging to an individual. There are some examples in the DARE 1 and DARE 2 awareness packs.
Do and Don’t say…a brief guide to disability labels, words and phrases
B) Words and Phrases
|Do not label the person by their impairment. The person is not the disability, the two concepts of impairment and disability are distinct entities that should be considered separately.
For example, do not call people: ‘schizophrenics’, ‘dyslexics’, ‘epileptics’, ‘paraplegics’, ‘the retarded’, ‘the mentally ill’, ‘the amputee’, etc. Use phrases such as: ‘people who have schizophrenia’, ‘people with dyslexia’, ‘individuals with epilepsy’, ‘people with mental retardation’, ‘people with a mental illness or psychiatric condition’, and so on.
|Do not label the disabled person as a (medical) patient unless there is an illness associated with the individual and/or they are receiving medical treatment.
Not all disabled people are medically ill or unwell, and many do not consider themselves to be ill or view themselves from a medical perspective.
|Do not use ‘emotionally loaded’ expressions such as: stroke victim, afflicted by cerebral palsy, suffering from multiple sclerosis, wheelchair bound.
Instead, use ‘emotionally neutral’ expressions such as: individual who had a stroke, person with cerebral palsy, people who have multiple sclerosis, person who uses a wheelchair.
|Do not refer to a person’s impairment unless it is relevant. This is a common problem. In the media, for example, the person’s impairment is often used to increase the emotive interest of the story or to evoke pity with such examples as: “brave deaf boy saved from burning house”, “she achieved her success despite being disabled”, “blind athlete battles on to record breaking win overcome their handicap” and so on.
Instead focus on the person and their achievement (the impairment is usually as irrelevant as the colour of their hair): for example, say “brave boy saved from house fire”, “athlete wins gold medal in record time”.
|Do not portray disabled people as overly courageous, brave, special, superhuman purely because of their impairment. This reinforces the sometimes strongly held belief that a person with an impairment has low ability or potential compared to non-disabled people and therefore their achievement must be somehow superhuman.
Of course disabled people and non-disabled people can be brave, courageous, shown special talent, or incredible effort in their field of work or study or some specific event. If this is the case then these phrases apply equally to disabled and non-disabled people. But avoid referring to their impairment if it is not relevant to the story. (See concluding remarks below for an important caveat ‘Referring to impairment – right or wrong?’)
|Do not use ‘normal’ or ‘natural’ to describe people who do not have an impairment. If you need to make comparisons between a disabled person and a non-disabled person then say ‘between non-disabled people and disabled people’. Don’t say ‘between disabled people and normal people’.|
|Do not assume that a person with a communication-impairment also has a cognitive impairment or that their intellectual and thinking skills are also impaired as a consequence of their specific communication difficulties.|
B) Words and phrases (this list is not exhaustive)
|The disabled, people or children with disabilities||Disabled people/children|
|Handicapped person||Disabled person/child|
|Afflicted by…Suffers from…A victim of…Has a disease||Has the condition…Has an impairment/living with…Has… [name of the condition/impairment]|
|Cripple, invalid, sufferer||Disabled person/child|
|Confined to a wheelchair, wheelchair bound||A wheelchair user (people who use mobility equipment see it more positively than being “bound”)|
|Spastic||Has Cerebral Palsy|
|Special needs||Specific requirements [name the requirements]|
|Integration, integrate||Inclusion, include|
|Disabled toilets||Accessible toilets|
|Severely disabled||Requires substantial or significant personal assistance|
|Disabilities||Impairments (or state the actual medical condition or impairment)|
|Cripple, invalid, sufferer||Disabled person/child|
|Mental illness/mental health problems||Living with a mental health problem/diagnosis [better to refer to the specific name if possible]|
|Learning disabilities||People with learning difficulties|
|The deaf||Deaf people/hard of hearing people/hearing impaired people (ref big D)|
|The blind||Blind people/partially sighted people/visually impaired people|
|Disabled parking||Parking for disabled drivers or accessible parking|
|Wheelchair accessible||Accessible to wheelchair/ scooter users|
|For wheelchairs||For wheelchair users|
|Care/in care||Personal assistance/has personal support|
|Carers (when referring to paid home carers)||Personal assistants or assistants|
|Carers (only used when individual cannot make decisions for her/himself)||Family members, relatives, friends|
|Deaf and dumb||Deaf (capital letter “D” is used in literature as a reference to deaf people who believe in and belong to a distinctive Deaf cultural group) or deaf without speech (if they do not have the ability or choose not use their voice)|
|Tongue-tied/Mute||Person with speech or communication impairment|
|Dwarf, midget||Person with short stature, short person|
|The person is: deformed/mongoloid/crazy, a phsyco’/a retard, slow in the head||Person with…a shortened arm/Down Syndrome/symptoms of mental illness/a developmental impairment.|
Remember: words and associated meanings, cultural values, and general usage change over time. Some will go out of fashion when replaced with new words or phrases, often as a consequence of new medical knowledge or new cultural policies and concepts.
Disability language will change as disabled people become more commonly involved in further and higher education, in positions of seniority in organisations, in areas of high competence e.g. sport, entertainment, and generally when they are simply more visible in local communities rather than in special institutions. Much of this is change is true in some parts of the world but not so in some others.
Referring to impairment – right or wrong?
This guide asks that you see the person before you see their impairment(s). It asks that you see that what disables is not the person’s impairment but how society, through its built environments, its education services, its politics and laws, can combine to disable the person with an impairment.
It also asks that you look at achievements by a person with an impairment without being unduly emotional or emotive, and it suggests this can be achieved by not referring to the impairment in a story about an individual unless it is highly relevant.
Whilst this is a very positive stance there is also an argument in favour of referring to the impairment because it can show that impairment is not, in itself, the barrier to achievement. This is not a contradiction. It can be useful to show the disabling factors they encountered on their journey which usually means either inadequate provision of resources in education and work environments or the lack of disability knowledge of the people they relied on – teachers and employers. The caveat for referring to an impairment in a story is conditional on you using the reference to an impairment objectively and only when it adds something meaningful to the story – without harming the integrity and dignity of the person concerned. It involves recognising and recording their achievement first, and noting their impairment(s) second.
As a general rule, if you are not sure about a word or phrase connected with disability or when talking with or about a person with an impairment, then ask that person(s) what their preference is or ask a reliable organisation for advice. Usually, but not always, an organisation will be more reliable if it has consulted with or involves disabled people in its activities. Be aware also that most disabled persons, and some organisations, are not professional researchers in disability(!) and that their use of language may more influenced by the values of their location or personal experience than the generally accepted international use of disability language. Nevertheless do respect an individual disabled persons sensitivities and rights around the language you use when with them or when describing them.
And as a final point, when using this guide or the many like it that exist around the world always try to find out when the guide was last published and revised to be confident it is at least up to date.
Further sources of information
• For further background information on the meanings of terms and definitions associated with disability please also refer to your DARE 1 and DARE 2 Project Packs (the tutor guidance notes), both of which have further examples and guidance on this subject. You will find links in these packs to the UN and EU articles and legislation and links to a range of organisations around the EU.
• For a fascinating brief summary of the history of some of the language used around disability visit the following webpage: http://www.bfi.org.uk/education/teaching/disability/further/
• For a comprehensive review of the literature and current UK position on this topic read: The Language Of Equality: A discussion paper. Ziauddin Sardar, UK Equality and Human Rights Commission. 2008 http://www.equality-ne.co.uk/downloads/342_languageofequality.pdf
• For a useful guide aimed at journalists and article writing for pubic consumption read: The Disability Handbook, National Union of Journalists © NUJ 2007 http://nujdisability.files.wordpress.com/2007/04/disability-handbook.pdf
• For a very well researched and interesting book on disability concepts including the social, medical an economic models that is hugely relevant today, read: Disability Concepts, Colin Barnes and Geoff Mercer, Polity Press 2002 0745625096