Disability Etiquette, part 2 – Terminology (or “what words to use”)

A child pointing to a group of identical people in wheelchairs, saying to his mother "Oh look - it's the disabled!"
With thanks to "Crippen" - http://www.crippencartoons.co.uk

Following on in this series of disability etiquette (first one here) is the sometimes thorny issue of terminology. For example, what do we call disabled people? Even on this issue there is some disagreement, although there are some definite no-nos. Please do not call us “handicapped”, “crippled”, “retarded” or “the disabled”! In the UK the correct term would be disabled people (the last sentence but one might have indicated this). This relates to the social model of disability (see this blog) – people are disabled by society, not just by their impairments. However, if you go to the USA and say “disabled people” you will be pulled up very quickly. They believe that we are people first, and disabled second, so they refer to us as “People with Disabilities” or PWD for short. So long as we use terminology which isn’t offensive, I’m not sure it matters that much. I tend to use disabled people nearly all of the time, unless I’m communicating with an exclusively USA audience. And, generally, I’d rather use people’s names than any label, but that’s not always appropriate when we are talking about practice!

Other words best avoided are “suffers from”. Rather than saying a person “suffers from” depression, multiple sclerosis or schizophrenia, for example, say they “have” those conditions, if relevant. Or a person “with” a particular condition. They may well suffer, but that’s up to them to say, not other people. Avoid any disempowering words like “she’s a victim of AIDS”. Many people who would be included in the legal definition of disability according to the Equality Act 2010 don’t consider themselves disabled at all (for example, many Deaf people) and this has to be respected.

Some terminology has changed over the years, as the terms became used as an insult. The word “Mongol” used to describe a person with Down’s Syndrome, but is no longer used because of the negative connotations it has developed. Similarly the word “spastic” has been replaced with someone with Cerebral Palsy (even The Spastic Society renamed itself as Scope). Other terms have changed over time as well – what we now know as bi-polar used to be called manic depression. It’s as well to be aware of these issues to avoid offending people.

A common trap which people can sometimes fall into is to describe someone as “wheelchair bound” or “confined to a wheelchair”. Most people who use wheelchairs find their chair is a means of liberation, not containment. Without their wheelchair, many people would be completely immobile, and others would have their mobility severely curtailed. Wheelchair-user is much more appropriate.

All this might make you feel like you have to walk on egg shells not to offend people. That really isn’t the case, just a bit of thought is required. As ever, if in doubt, ask the person what terminology they prefer. Don’t worry about saying “I’ll see you soon” to a blind or sight-impared person – most would say that themselves and won’t be offended. If people know you are genuinely not meaning to offend, they will forgive the odd slip. However, if your behaviour generally is patronising or judgmental and you also use inappropriate terminology people may well question your motives.

If you are concerned about any issues around terminology – please ask here. I’d much rather people ask than avoid the issue altogether as that can be very isolating for people.

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18 thoughts on “Disability Etiquette, part 2 – Terminology (or “what words to use”)

  1. Great part 2 Jane, some really good points. I was at ‘Games Maker’ training last week and I know the Olympics is a contentious issue with many but their diversity training and protocols were good. The reinforcement of positive language and the way to address people was very positive and nicely in line with what you are saying.

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  2. Excellent article Jane, and very useful.

    Strangely enough this terminology issue came up recently at a workshop I attended in my doppelganger role of cancer patient representative.

    The term in question is “survivorship” – intending to address, accommodate and care for the – thankfully – rapidly growing number of cancer patients who are either cured or who are being treated successfully for the disease long-term.

    Nearly all of us hate the word “survivorship” – makes us feel like we were rescued from the Titanic and emphasises the awful “victim” feeling you describe – but none of us can think of a better term!

    All such terminology is tricky – and made all the more relevant owing to the evolving circumstances of disease and disability. Hmmmm.

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  3. I’ve been reading your articles with interest as I ‘suffer’ from a very rare genetic condition and also walk with a stick. I have been verbally attacked because of that.

    Have you heard of Steve Wilkinson? He is a wheelchair user in the north of England and is very pro Access. He runs WheelchairSteve Ltd http://wheelchairsteve.com/

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    1. Small world – I know Steve too… and his wheelchair has got me into trouble on one occasion for not getting the terminology right – in the opinion of other people (not Steve!).

      You know how sometimes everyone in the room stops talking at once by co-incidence?

      That happened recently when Steve and I were comparing notes about losing weight and suddenly everyone heard me (shouting over the voices that suddenly weren’t there any more) “Steve, that’s cheating… getting a lighter wheelchair doesn’t count as loosing weight, you fat slob!”. Cue shocked looks from a lot of people but howls of laughter from Steve and the other people in our group.

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  4. Very helpful suggestions. I live in the States and was taught, as you mention, that “people with disabilities” was the preferred term. It’s quite interesting to me that the terms vary depending on which side of the pond one lives on.

    You might be interested to know that in journalism school we are taught not to write that someone “suffers from” or is a “victim of” x, y, or z. Both would be examples of editorializing rather than stating facts.

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  5. I’m a Canadian with several “disabilities” caused by the stroke I had in 2005. I talk “funny”, have a “spastic” right hand, less strength, and use a walker outside of my apartment. Many people assume becvause I talk “weird” that I don’t have intelligence, I do. Mant people who see me using a walker make assumptions too BUT they help me and since I smile at them and say thanks they smile back.

    One of the great side effects is that people listen closely to me now – they have to so they can understand 🙂

    I could go on and on with examples both great and not so great but suffice it to say that I like it best when people sk me how they can help me. Don’t you? Too bad that one has to have a visible disability for people to be help.

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  6. Once again a very helpful article. Thank you.

    Society may stumble and take some very wrong turns, but it seems to me that there is a genuine will to respect the feelings and the common humanity of all people who would previously have been perceived as outside the norm.

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  7. Very good post Jane,

    I honestly think talking about this will help; as many will use avoidance altogether, as they don’t know what to say, and assume rather than asking.

    Thanks Jane ! 🙂

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  8. That’s very helpful, thanks.

    So, to summarise, it’s OK to use:

    – disabled people (UK) / people with disabilities (US)
    – have [condition] / with [condition]
    – Down’s Syndrome / Cerebral Palsy / bi-polar
    – wheelchair-user
    – see you soon

    And it’s *not* OK to use:

    – handicapped / crippled /retarded / the disabled
    – suffers from / victim of
    – Mongol / Spastic / manic depression
    – wheelchair-bound / confined to a wheelchair

    I remember walking through the park when a teenager called another one a “Spastic”. I asked if she knew what it meant. When I told her, she was embarrassed. She thought it was just a harmless playground term.

    Perhaps this stuff should be taught in schools?

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  9. I think Jackie has an excellent point – about teaching this in schools – and it’s one, in my opinion, that is further reaching than kids learning how to communicate with and behave naturally yet respectfully around people with disabilities.

    For example, differences in colour, creed, culture and so on are all areas that could be gainfully discussed, and understanding integration fostered. Mind you, that would mean we’d have to have teachers that were up to the task…

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  10. I agree that this needs to be taught in schools, but it’s also something that people who have been in business for a while need help with. I have to admit that even I feel confused at times and need to ask for help or check online.

    We sometimes have people making mistakes in the public eye, for example the recent Ricky Gervais situation. Then you hear people defending the situation by saying that it’s useful to bring the dicussion out into the open. Part of me agrees with that.

    With more discussion there will come a time when we can all be familiar with the language and get ourselves busy with discussing the issues, such as how to increase work opportunities for all of the very competent disabled people out there.

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  11. You are absolutely right– deaf people don’t consider themselves to be disabled. Furthermore, they actually have a sense of pride in their culture and are certainly not offended by being called deaf. At least not here in the U.S.
    Other people with disabilities also like to focus on the things they CAN do rather than their limitations.
    Aside from the appropriate terms it’s also important to remember that people with disabilities don’t want to be treated like a charity case. Empathy is ok, but don’t offer help with every little thing no matter how long it takes the person to complete the task.

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  12. Thank you Astrid – yes, excellent points. It’s all about respect isn’t it? Recognising that deaf and/or disabled people are just as unique and valuable as everyone else – we’re not there to be patronised or talked down to.

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  13. Rae: I think there are…which makes it even more impressive that they are all so far away from it! xGemmaK: Exactly!MrN: We do ieednd have something similar, The Disability Discrimination Act. Unfortunately it puts the onus on the individual disabled person to make and carry out a complaint, unlike say race or sex laws which criminalise many such discriminations. If say I could not access a local shop, which in my town is likely as the vast majority are inaccessible, then the legislation basically means I would have to raise the issue with the owner of the premises, then if they fail to act after a certain amount of time and warnings it would be me who had to take them to court using DDA an expensive and stressful process. The DDA is basically toothless.As for the state of disabled facilities, the photos I’m putting up of toilets are typical, I’ve actually never been in a disabled loo which isn’t used as a store room, lacking mirror, dirty, locked or simply impossible to use because of the design, and I’m relatively speaking very mobile. I think part of the problem can be found in the new/old building issue , because so many of our buildings are old they can be very difficult or more likely expensive to adjust and in my experience the vast majority of business owners simply don’t care, after all, what’s the worst that can happen to them? Oh yeah, they might eventually get taken to court and told they must make adjusments which are considered reasonable by able bodied people, it’s stupid!!

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  14. First off, this series is incredibly helpful, thank you so much for putting it together.

    Weirdly enough, I always thought the acceptableness of bipolar/manic depression was the other way around! Most of my growing up everyone around me called it bipolar, but it was almost always used negatively, so when I heard the term manic depression I started using it instead; it runs in both sides of my family and I didn’t get diagnosed at all for a long time, so for me ‘manic depression’ was terminology that meant not only less stigma, but the confirmation that it was an actual condition and I wasn’t just a lazy/out-of-control person at heart.

    I will definitely keep that in mind in the future, though, since where I grew up (Deep South) is not exactly a bastion of sensitivity and good terminology. Just goes to show that people with disabilities also need to be well-informed and thoughtful about how to approach other people with disabilities, even similar ones to their own, because everyone is different. Thank you again for this series!

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