What are the ethical issues in simplifying information? And what legitimacy does Easy Read have in adapting language for accessibility?
Nothing about us without us
The slogan ‘nothing about us without us’ has become a principle of accessible information, promoting the idea that information should not be adapted without full participation of disabled people.
But has this principle always been at the heart of the Easy Read method?
Origins of Easy Read
Evidence suggests Easy Read writing techniques have derived from Plain English, which developed in the mid 20th century in the US. The techniques were developed to adapt writing to lower educational reading grade levels – grade levels created by the same people who devised the writing techniques.
The core ideas of Plain English writing can be traced to Rupert Flesch, an Austrian lawyer and influential writer, whose writing advice was shaped by personal preferences and positivist research.
Flesch does not mention disability, as far as I can tell. His references to the reader are rare, and resonate within an incompetence model of disability, which was typical of his time:
“Don’t puzzle your reader … we know that this is not quite as easy as it looks, otherwise people wouldn’t keep on making these mistakes.”
“Use active verbs … a sentence that is cast in the active voice hits the mind of the reader and makes him sit up and take notice. A passive voice sentence passes through his mind without much trace.”
(In fact, there is no such thing as an ‘active verb’ in English, yet this advice has found its way verbatim into Easy Read guidelines.)
Research claiming effectiveness of traditional Plain English methods also rarely involves people with language and learning disabilities.
It seems Easy Read writing is an ‘off the peg’ rather than ‘made to measure’ solution to accessible information for people with disabilities. Writing techniques were developed ‘without us’, and without robust contemporary language and reading disability research.
Who is ‘us’ in accessible information?
In 1996 the UK Government published an ‘Informability Manual’ to help the private and public sectors reach a ‘wider spectrum of people’. That spectrum included people with ‘low literacy’ and ‘disability’. Under the heading ‘general audiences’, it also included ‘everyone’.
In 2001 ‘Valuing People’ introduced a person-centred approach for people with learning disabilities, and the involvement of people with learning disabilities subsequently became a fundamental principle in the creation and testing of accessible information.
A narrower target audience
This has resulted in a narrowing of the target audience for accessible information, so that people with learning difficulties have become the main or only language disability group for Easy Read.
Yet there are numerous causes of language difficulties and disabilities, including aphasia, autism, dementia, head injury, neurological diseases and hearing impairment. There are also many people who have mild, undiagnosed, unrecognised or fluctuating language and cognitive needs, which impact on their understanding.
And there is also the ‘average’ reader, who is caught in an accessibility gap without language adaptation.
Can accessible information work within the principles of ‘Nothing about us without us’, unless greater diversity is incorporated into the approach?
‘Us’ on a continuum of need
Data from the Department of Business, Innovation and Skills shows the literacy skills of the adult population occur on a continuum, following a normal distribution curve:
Language needs also occur on a continuum, and ability to access language is dependent not just on the ability of the individual, but also the context (the social model of disability).
If we categorise our readers by diagnosis, or by a dual system of language accessibility (unadapted and adapted information), we assume homogeneity, and create arbitrary cut off points.
Do all people with learning disabilities read at the one idea per sentence level, and need pictures to help understanding of words and single sentences? Or are some people more able, and some people less able?
Do people with acquired disabilities have the same needs and preferences as people with developmental learning disabilities, or people with fluctuating language needs?
Fundamental to the person centered approach is recognition that everyone is different. But as language and literacy needs occur on a continuum, how can we create a system that meets everyone’s needs?
Mass produced, generic, printed information can’t easily be personalised. Some people can’t, or don’t want to, use written information as a means to acquire information. Everyone, at times – whether we have a disability or not – benefits from personalised information, provided by one to one communication.
What written information does do is provide a resource for knowledge and personalised support.
Equal access to information
But here lies another ethical issue – by simplifying and reducing text, Easy Read writers have to make decisions about what to include, and what to omit. And by omitting information, we no longer have equal access to the same information.
(That’s actually two ethical issues, but I’ll concentrate on the second.)
Take a look at this extract from an Easy Read guide to making a complaint:
‘If you are unhappy you can speak to a member of staff or speak to PALS.’
Now here is an extract from an unadapted guide to making a complaint:
‘The best way to make a complaint is to talk to staff. If you do not feel comfortable you can speak to PALS.’
The unadapted guide explains why it is often a good idea to talk to staff first, what PALS stands for, what the purpose of PALs is, and what they can do specifically to help.
The Easy Read version does not explain what PALS stands for, gives no guidance on how to decide which option is the best for you, and the fact that PALS can help you make a complaint is inferred later in the page, rather than explained directly.
In the example above, the Easy Read reader does not have access to the same information. If the written leaflet is the only source of information, the Easy Read reader is not equally empowered to make an informed choice about how to make a complaint.
Informed support for informed choice
But what if the Easy Read document is exactly the right level for the Easy Read reader, and the Easy Read reader couldn’t understand the unadapted document anyway? Is Easy Read the best solution for equal accessibility to information?
Written language is more complex than spoken language, and it is decontextualised and impersonal. For most people, the capacity to understand spoken language is greater than the capacity to understand written language.
That means everyone could understand more with personalised support.
But, if there is a family member, carer or support worker who is also relying on the Easy Read document as their source of knowledge, they do not have the additional information they need to support a more informed choice.
An Easy Read reader could legitimately ask:
“What’s the best way for me to make a complaint?”
“What is PALS?”
“Why contact them? What can they do for me?”
There are no answers in the Easy Read document. By omitting information, the Easy Read document creates a barrier to informed, personalised support.
Easy Read ethics
A dual system, of unadapted and adapted information, creates an accessibility gap, in which the ‘average ‘ reader falls.
We must recognise the importance of meeting the language and information needs of those in a supportive role, and ensure accessible information is available for everyone, across the adult literacy ‘normal distribution curve’.
Improvements can be made by ensuring adaptations are underpinned by robust research, and based on the language and knowledge needs of the intended audience
If you’d like to know more about meeting the accessibility gap, and evidence based language adaptations, please get in touch.