What are words worth?

Eilís Hughes – GSNV Co-ordinator

There is no question that language can be laden with hidden meaning. Most of the professionals who work in genetics (doctors, social workers, genetic counsellors, scientists) are aware of the need for choosing their words carefully and sometimes struggle with this. Technical accuracy of words must be balanced with sensitivity to the unspoken subtle connotations some words hold. Words that were once considered fine to use, may now be inappropriate due to changes in common language and changes in societal attitudes.

In a recent Quality Assurance exercise at Genetic Health Services Victoria and the GSNV, we asked both consumers and professionals what they were most concerned about with regards to providing a good service. We weren’t surprised to find that high on the consumers’ list of concerns was “Appropriate language and clarity of speech (use of layman terms)”. Even higher was the simple need for “Respect”, which presumably would include the use of language which conveys respect to families. (Genetic Health Services Victoria proposes to conduct further investigations to try to understand the full meaning of “respect” as a concept in service delivery).

At the GSNV conference in May, we invited participants to offer their thoughts on the language used in genetics. We listed some groups of words and asked people to indicate which words they found offensive or unsuitable. (The words and phrases were grouped according to the contexts in which they might be used, and do not necessarily mean exactly the same thing.) Thirty-two people responded, and their responses are summarised below. Words which were found unsuitable by a majority are highlighted in bold text.

Abnormality – 56%
Birth defect – 47%
Birth anomaly – 34%
Congenital disability – 22%
Another alternative provided was “birth condition”. Someone commented “I thought the term ‘hand difference’, which Aussie Hands uses, was a good idea.”

Genetic disease – 53%
Genetic disorder – 19%
Genetic condition – 3%
It was commented by a participant that they “Generally prefer ‘condition’ rather than ‘disease’.” Another person said “All people, but especially doctors, need to use the term disorder and not disease. Disease is transferable to other people – contagious - passed on by germs. A disorder is a dis-order within our bodies – outside the normal.”

Mental retardation – 81%
Slow learner – 44%
Intellectual disability – 13%
Developmental delay – 9%
Learning difficulty – 3%
Mental retardation is a term used frequently by professionals, and may be considered an accurate term when we remember that “retardation” means a “slowing”, and they are trying to describe a person whose brain (or mental) development is much slower than most other people’s. However, out in the big wide (non-medical) world the terms “retard” and “retardation” are used as insults, and are applied broadly and inaccurately to people who are considered less than perfect. Additionally, the word “mental”, while referring to the brain generally, has connotations of psychiatric conditions.

Mutant gene – 44%
Defective gene – 34%
Faulty gene – 28%
Allele – 22%
Mutation – 22%
Gene change – 6%
While mutant may well be strictly correct in scientific terms, its meaning is different in common language, as recognised by this comment: “Mutant is tainted from space alien movies - best avoided except to say it means ‘changed’.” Another alternative which was offered was “altered gene”. It was commented that “allele” is too technical a term.

Spastic – 97%
Retarded – 94%
Handicapped person – 69%
Disabled person – 38%
Person with a disability – 0%
Person with special needs – 0%
The comment was made that,“In general ‘a person with …..’ is preferable to ‘he is a ….’” A similar comment was: “I think it’s good to use ‘people with…’, ‘people affected by…’” And “We avoid, where possible, label nouns e.g patients, sufferers, victims and words ending with ‘ic’, like epileptics etc.” This is a rule of thumb which is followed by the GSNV staff. While no-one in this survey indicated that “personal with special needs” is unsuitable, I heard a speaker (who himself was considered to have special needs, as was his child) at the Disability With Attitude conference who pointed out that people with disabilities do not have special needs – in fact they have the same needs as everyone else, eg food, shelter, love, medical care.

Normal – 28%
Unaffected – 13%
It was commented that everyone is normal. Alternatives offered were “apparently normal” and “average”. Someone else suggested “usual”: “I use ‘usual’ when talking about sex chromosome issues with XO or XY girls. ‘XX is the chromosome arrangement usually found in girls, but there are exceptions’ – thus establishing that the patient’s a girl, not something else.”

Fetus – 19%
Embryo – 19%
Baby – 6%
Pregnancy – 6%
Unborn baby – 3%
A comment was made that the choice of words here depends on the developmental stage. Similarly, “The use of words and scientific language often needs to be accompanied by ‘meanings and definitions’. If this is done systematically then there should not be confusion. On the other hand care needs to be taken with some words that may be offensive, embryo and fetus – could be defined by their stages of development.”

General comments about professionals’ choice of language included:

• “Avoid medical jargon.”
• “Important for professionals to be aware of non-verbal - tone of voice, body language. Need to be self aware – do they feel uncomfortable, awkward using various words.”
• “One of the biggest challenges is to avoid language which conjures up thoughts of parental guilt/blame or divine punishment.”
• “Avoid terms which make people feel bad about themselves or their children. ‘Retarded’ is one of these words, ‘normal’ is another. The Short Statured People of Australia taught us to talk about ‘average’ or ‘usual’ stature instead of ‘normal’.”

It was recognised that the choice of language can depend on who you’re talking to. “I would feel comfortable using this language when speaking with a health professionals but not another parent.” Another person commenting on context said, “If words are not in context it is hard to make a judgement ie abnormal used objectively or personally?”

In terms of naming services, someone commented about the name Genetic Health Services Victoria. “Don’t like the words ‘Genetic Health’. The people using the services of GHSV, by their nature do not have ‘healthy’ genes. Such word-use, highlights their loss.”

The results presented here provide just a small snapshot of a group of people’s feelings about language. A number of people at Genetic Health Services Victoria, Murdoch Childrens Research Institute and the GSNV are very interested in investigating this in more detail.

I have invited Tony Briffa, a committee member of the GSNV and president of the Androgen Insensitivity Syndrome Support Group of Australia, to offer his thoughts on this topic. Click on this link to read them.

We are also interested in your thoughts. Please email us on news@gsnv.org.au, or write to us at PO Box 1100, Parkville 3052, or call us on (03) 8341-6315 if you’d just like to chat about it.