Terminology

Victoria Brignell takes us on a trip across the often controversial territory of language and disabi

Earlier this month a friend of mine invited me to comedian Jeremy Hardy’s one-man show in Colchester.

Much of his routine seemed to concern death. After talking about the News Quiz ("If there are any News Quiz fans in the audience, I suggest you make the most of us because we’re dropping like nine pins"), his likely contribution to Mrs Thatcher’s obituary ("I’m going to call her the People’s Pinochet") and his views on funerals ("I don’t want a happy funeral. I want people to be torn to pieces by my death"), Hardy ruminated on the significance of language.

In the past, he said, we used to talk about buying a house. Now we refer to buying a property. In his opinion, we no longer regard a house primarily as a home, it has to be an investment opportunity as well, and this shift in values is reflected in the labels we use.

Labels are an issue for disabled people too. When you become disabled, sooner or later you have to confront the question of what you want to be called. It cannot be avoided.

There will be times when people ask you what your condition is or you have to fill in forms which require you to state the nature of your disability. Consequently, each disabled person has to work out what words or phrases they would like the world to apply to them.

I know disabled people who care about terminology passionately and others who aren’t really bothered. But every disabled person will contemplate the appropriateness of descriptions at some point. So what labels do us crips prefer to be stuck on us?

Let’s get the moans and the gripes out of the way first. Almost all disabled people would be annoyed to be called handicapped. It comes from the phrase 'cap in hand' meaning begging, therefore it’s a word disabled people usually find degrading and demeaning. (Thanks to the efforts of disability campaigners, it’s a word that tends now only to be used by people of my grandparents’ generation).

A large proportion of disabled people would not want to be called a victim or sufferer because they reinforce a negative view of disability. These terms confuse disability with illness and also imply that the disabled person regards their disability as a personal burden, which is not necessarily the case.

Many disabled people feel they have a high quality of life (as high as that of able-bodied people) and resent able-bodied people assuming otherwise.

Blind people and deaf people don’t want to be referred to as the blind or the deaf. Lumping everyone together in this way ignores people’s individuality and gives the misleading impression that people with hearing or visual impairments are one homogeneous group.

Those who require wheelchairs usually object vehemently to the phrases wheelchair-bound and confined to a wheelchair. These terms are simply misleading. I am not tied into my wheelchair, therefore I am not wheelchair-bound. And I don’t spend all my life in my wheelchair. I leave my wheelchair to sleep, to have physiotherapy and to go to the toilet so I am certainly not 'confined' to it.

A wheelchair is a highly useful, indeed essential, tool. It’s a positive piece of equipment, an aid to mobility, just like a pair of shoes or a car and you don’t refer to being shoe-bound or car-bound!

Those are the labels many crips don’t like. So what do we want to be called? Many disabled people want to be known as just that – a 'disabled person', either for political or practical reasons.

This term is strongly linked with the social model of disability which is the philosophical basis of the disability rights movement. According to the social model of disability, people are disabled not so much by their impairment but by the structure of society, prejudicial attitudes and the way the physical environment is constructed.

Hence we are disabled people. It’s also a very easy-to-use term – it’s common and concise – and that’s why you’ll find it in these columns.

However, not everyone favours this term. Some prefer person with a disability because they argue it places the focus on the person and not their impairment which is, after all, a secondary issue.

Back in the mid-1990s, when I was elected to represent disabled students on Cambridge University Students Union executive, my official job title (which I inherited from my predecessor) was 'students with disabilities officer'. That’s obviously rather a mouthful and most of the time we ended up abbreviating it to SWD officer.

Others reject both disabled people and people with a disability on the grounds that these terms draw attention to what they can’t do rather than what they have achieved. They want to be referred to as survivors – 'polio survivor', 'spinal injury survivor' or 'mental health survivor'.

In their view, this term celebrates their strengths, their quality of life, and their pride in the skills they have developed. They regard themselves as survivors not just in the medical sense but also politically and economically. As one disability campaigner wrote: "Those of us who are involved in the struggle to end our oppression are, simply, survivors."

There are many decent alternatives to those other expressions which have the potential to irritate. Phrases like victim of or suffers from can easily be replaced with 'the person has...', 'a person with...' or 'a person experiencing...'. And instead of the blind or the deaf, use 'people with visual/hearing impairments' or 'blind/deaf people'.

Rather than wheelchair-bound, most disabled people would choose 'wheelchair-user'. It’s far more suitable, not only because it’s technically accurate but also because it places disabled people in an active rather than a passive role. Recently I’ve come across people using the term 'wheelchair-rider'. This might sound odd but if you can describe yourself as riding a bike or a horse, then why not a wheelchair?

However, it’s important to remember that there are no hard and fast rules about all this. Despite my list of 'dos and don’ts', you shouldn’t get hung up about terminology.

What counts as appropriate language is very much a matter of personal taste.

I’m pretty sure I heard Prof Stephen Hawking refer to himself as "wheelchair-bound" during the press conference after his zero-gravity flight in April. And I don’t always use the officially correct terminology either.

In some public sector guidance documents, staff are advised to use 'non-disabled', not able-bodied. Able-bodied is wrong, goes the argument, firstly because it implies that all disabilities are physical, overlooking learning disabilities and mental illness, and secondly because it suggests disabled people are not able. As you will have gathered from reading these columns, I use 'able-bodied' all the time, without any worries.

These same guidance documents also tell me to avoid using the term disabled toilet and instead use 'accessible toilet'.

I suppose I can see their point to a certain extent. After all, a disabled toilet suggests one that’s broken down! (Perhaps the oldest disability joke is: "Are you looking for a disabled toilet?" "No, I want one that works."). But frankly, disabled people say 'disabled toilet' all the time and there’s nothing offensive about it. I’m certainly going to carry on using it.

Well, that’s all for this month from this wheelchair-riding, tumour-surviving, disabled woman. I’m off to watch Jeremy Clarkson on video. My comedy tastes are very politically balanced...