Disability Etiquette, part 1 – the basics

With thanks to "Crippen" - http://www.crippencartoons.co.uk/

Sometimes a reluctance to engage with disabled people is through embarrassment rather than prejudice. A desire to not offend or say the wrong the thing, or of not being sure when, how or if to offer help, or which words to use can mean we avoid the situation altogether. Rendering the disabled person even more isolated. For that reason, I decided to write a series of blogs on “disability etiquette” so that employers and colleagues can feel confident in being around disabled people. There’s nothing worse than a genuinely inclusive employer hiring someone because they were the best person for the job, only for the team they will be working in to exclude that person through the fear of “getting it wrong”.

People are individuals

The most important point to emphasise, of course, is that each disabled person is different and unique, and what works for one person may not work for another. So it’s important to ask rather than make assumptions. People can usually sense intentions, so if you are genuinely trying to get it right, they won’t mind answering questions you may think are silly. Better that than the making the (wrong) assumption on their behalf. And of course it’s important to really listen to the answer you receive. I recently volunteered to take on an extra role at a charity I volunteer for. Despite the fact I had given much consideration around how I could fit this role into the rest of my life, the decision was made (by others) that “it would be too much for me”. A fellow volunteer had also put himself forward and been accepted with no question – but he is not disabled. I’m sure I’m the best qualified person to know what is or isn’t going to be too much for me! Making decisions on behalf of someone else without consulting them is not only extremely hurtful, it can be illegal (Equality Act 2010).

If a task comes up at work and you aren’t sure if the employee is able to carry it out, rather than agonising over what to do, just ask them. They are the best person to tell you what they are able to do, or suggest reasonable adjustments that might enable them to carry it out or to tell you that no, they are unable to carry out this particular task. If the relationship is one of genuinely trying to explore possibilities then people are unlikely to be offended by this. And many times you may be surprised at just how resourceful the employee is.

Disabled people are people too

Sometimes disabled people can be left out of the conversation altogether, even if it is about them. The typical “does he take sugar” scenario (see the wonderful “Crippen’s cartoon, above). It’s very easy to talk to the person pushing the wheelchair rather than the human being sat in it. This can particularly happen when, for example, the wheelchair-user has cerebral palsy which might cause unusual speech and sometimes dribbling (not a symptom that all people with cerebral palsy experience, but some do). The assumption can be that they will also have learning disabilities, whereas in many cases the person being ignored may well be more intelligent than the person ignoring them. I’ve seen people speaking to colleagues with cerebral palsy as ‘tho they were five years old, and then being visibly taken aback with the wisdom of the response.

My mother was recently taken to hospital with chest pains. She is also severely disabled with a separate condition. When the doctor finally got around to her cubicle I found it very difficult to encourage the doctor to direct her questions to my mother rather than me (I’m as disabled as my mother but don’t have speech difficulties). “Is she diabetic?”, “has she had these turns before?” and so on. Even my repeated “my mother can tell you more about that than I can” didn’t seem to make any difference.

Disability aids

I have known people “helpfully” place my crutches out of reach. Worse, I have seen people wheel my friend out of the way by pushing her and her wheelchair to one side. How would that person feel if someone physically picked them up and put them down in a different place? Just as outraged and violated, I suspect. Or people hang their coats on the back of someone else’s wheelchair. It’s important to respect why the person has the aid, and to respect it as such.

Linked with this point is the issue of guide or assistance dogs. These dogs tend to wear a jacket when they are “working” which is a way of telling others to leave them alone to get on with it. Calling, patting or feeding the dog isn’t fair to the dog or its owner. At the very least, ask if you can pet the dog first. I hear from friends with assistance dogs about people completely ignoring them (the person) and having a long ‘conversation’ with the dog. Not nice. And more ridiculous, shop workers who have tried to give the change to the guide dog …

I’ll return to disability ettiquette in future blogs, but in the meantime I’d love to hear from others about their experiences. If you are disabled, what behaviours are helpful for you? If you are non-disabled, what sutuations make you feel awkward?

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22 thoughts on “Disability Etiquette, part 1 – the basics

  1. I once worked in a place where someone in a wheelchair was told not to move away from their desk as they block the escape route in the event of a fire. It took a very pointed “so we just leave Jan behind her desk to burn to death” to see the stupidity of their comment and to actually get a system in place for her to exit the building safely. I like to think some good came out of the comment…

    Another thing to consider is disabilities are not the same in everyone, in some people they are worse and in others they have a coping mechanism / support in place. You have to do as you suggest Jane, just ask and work together instead of making assumptions.

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    1. Thanks Sarah – yes, the first action should be to ask the individual. Like anyone other sector of the population, no two disabled people are alike, even if they have identical disabilities.

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  2. I once heard a speaker who had been in the army and lost a hand. He broke the ice by saying that, yes, he only had one hand and talking about people’s reactions.

    He said that often people would say what they perceived to be the wrong thing in complete innocence; ‘can I give you a hand?’, ‘I’ve got to hand it to you’ etc. The they would realise and react with complete horror.

    This was all told with such charm and sense of fun that the ice was broken and everyone enjoyed the rest of his speech all the more.

    It is a difficult thing because no-one would dream of assuming that the issue could be approached with humour, but when permission is given all the awkwardness seems to disappear.

    I do think that as we ‘normalise’ disability in business, and your work is a great example of this happening Jane, it will become easier for all. I know there’s a long way to go.

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    1. Humour can be a great ice breaker – Laurence Clarke (a comedian with cerebral palsy) begins his “stand up” (sit down) routine by saying “I’m not p*ssed – I always speak like this”!

      It has to be used with caution of course, and led by the disabled person themselves – because humour can also be used to undermine or discriminate.

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  3. Maybe if more people were exposed to the likes of Nick Vujicic whilst growing up there’d be a whole lot less prejudice against those with varying degrees of disability!

    I’d suggest watching one or more of the many videos of him that can be found on YouTube. I think I’d defy anyone NOT tobe inspired by the “Fallen down and can’t get up? YES YOU CAN …” one 😉

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    1. Thanks Linda – I have mixed views about “inspirational” disabled speakers. And I agree that Nick is indeed inspirational.

      On the one hand they can challenge stereotypes and provoke thought. On the other hand, there is a danger that disabled people have to fall into a narrow group of categories – objects of pity, benefit scroungers or inspirational heroes. Most disabled people are just people, getting on with their lives like everyone else.

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  4. Beyond the specifics of disability, I think the issue is one of perceived difference. If somebody presents very clear differences to whatever the group norm is, then it’s a challenge to all. Either everyone pretends that there is no difference, which is awkward and false, or else the difference gets acknowledged.

    As in some of the examples above, it’s most comfortable for the sameys if the person who is different somehow broaches the subject in a way that opens comfortable communication.

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  5. Jane, this series will do a lot of good.

    Twenty years ago while doing freelance work for a large quasi-governmental agency, I had the opportunity to attend a day-long event that was meant to help non-disabled people do a better job of working with people who have disabilities. It was eye-opening and very beneficial.

    The best advice I remember hearing that day–and the simplest–was simply to engage one-on-one with people as individuals. If you don’t know whether someone needs help, just ask. Make eye contact. Don’t let your own fear of embarrassing yourself prevent you from interacting with another human being who happens to have a problem.

    That did a lot to relieve my fear of doing or saying “the wrong thing.”

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      1. Hi .. well where do i start ..I’ve always been a quiet pesorn and to myself all my life. Never been one to talk to anyone about anything not even when something was bothering me. I’ve been told that I am cold in some ways. Laughing is something that I don’t do a lot of. Even when a joke is told or a comedy is on tv which everyone else laughs at. Trying to keep my mind on one thing for a certain period is very difficult for me. I’m always changing the subject then I go back to it. For 5 yrs from the age of 20 to the age 25 .. I use to drink all the time from the time I woke up til I passed out , then I would start again. Plus, I use to take street drugs .. cocaine, uppers, downers and other drugs. I was trying to hide as some people would describe it. It was to deal with being depressed wanting to be happy and content.Then I was diagnosed with bi polar back in 2005 which is a disorder that is past down from generations. My mom fully understands now why I was/am the type of pesorn that she had seen growing up and to this day. I also have fibromylgia which i was diagnosed with back in 2002 but the government didn’t recognize as a disorder unless you have a severe prolonged illness. One of your other readers had the same problem with CPP .. Once I got diagnosed with bi polar was when the government realized that I had another illness. So they accepted my application at that time which I did get a check from 2002 up to 2005 .. now I am on both disabilities .. ODSP and CPP . They aren’t the only illnesses I was diagnosed with. I also have Hep. C which also was diagnosed back in 2002. Even the medication that they have me on helps a bit but there is no miracle ones out there. I’ve tried natural herbs, nutritional drinks and other things to try to work for me with the bi polar and the fibromylgia including exercising. I do deal with life and I’m not on street drugs or alcohol even though it would be so easy for me to go back to that way of life. My son is the one major reason that I’m not on them. I am one to clutch onto a pesorn if you would like to describe it that way to be able to get through life and stay away from the way I use to be. I hope your readers can relate to part of my life. Pauline

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  6. A very old friend of mine has been paraplegic since the age of 18. We used to work together in regional TV and this guy could hand-wheel his chair faster than I could run. He also was into water-skiing and abseiling in his chair. He very quickly taught me how to deal with someone else’s disability … largely by beating me to the Granada TV canteen from his office in Manchester in his chair while I tried to keep up on foot!

    As you say, Jane, simply asking people what they need in an honest, open way seems to be acceptable. One time I asked a (wheel chair user) woman in a supermarket if she wanted me to lift anything down from the upper shelf for her and she said, “no thanks, but watch this!” Her chair had a fabulous lifting device in it which raised her way above my reach and she laughed down at me, “now, what do YOU want from the top shelf?” We had a good chinwag after that – she was a hoot.

    Another real eye opener for me was when I sat next to a guy at a lunch party. I think he may have been a CP sufferer – not sure, but he couldn’t talk or feed himself so I helped him with his lunch and we had the most fascinating discussion about Shakespeare with me speaking orally, and him speaking via his on-board computer. I felt a little awkward to start with but in the end I forgot about his disabilities and we chatted away for ages.

    Overall I would say the most important way for the able-bodied to relate to people with disabilities is to look beyond the disabilities and find the person. Even if their ability to communicate is limited, the person is still there, and if you are unsure about how to react many disabled people will go to some lengths to put you at your ease. Then, friendship and comradeship can begin.

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    1. Thank you for your response Suze – as you say, it’s all down to respect and communication, isn’t it? And seeing the other person as an individual, worthy of getting to know.

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  7. Brilliant post Jane,

    I have experienced several of the things you have mentioned.

    Many decide what I can or can’t do without involving me in the decision – it still hurts, I realise they mean well, but would still like to be involved in the decision process.

    I would like people to speak to me, not just to whoever I am with. For people to consider what they are actually saying re me using a stick or wheelchair.

    I do think a lot of high street retail businesses need to consider things more carefully sometimes.

    I would like shops to rethink queue systems, it’s often difficult to get around in a wheelchair.

    I also wish shops would consider spacing between clothes rails and shelving as sometimes it’s impossible to get around, and when asking for help, that I wasn’t made to feel like a nuisance.

    I often ask friends or family to go to the till for me, as I have had just too many bad experiences. Better training would be make a huge difference.

    Online shops makes it so much easier, but wish it wasn’t like that.

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    1. Thank you Anita – I can definitely relate to your comments regarding shops! I do nearly all my shopping online now, but it’s not the same is it? Particularly when shopping for clothes or shoes.

      Your point about training is key – we don’t just face physical barriers, but attitudinal ones as well. I’ll come onto this in a future blog because it is so important to get that bit right!

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  8. You make excellent points Jane.

    I’ve always found using ordinary common sense comes in handy.

    I’ve known, worked with and even married a disabled person or two in my life, but I still struggle with that first hello. Once past that it’s smooth sailing, but those first moments are still uncomfortable, even though they shouldn’t be.

    Good topic Jane.

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  9. Thank you LaRae – as a disabled person we can often sense that discomfort, and it’s not always easy to know how to respond. Humour sometimes works, acknowledging the discomfort can work, but usually you just have to wait for the other person to get over thmselves and realise that, after all, you are just another human being.

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  10. Very interesting post, Jane.

    Two or three years ago I worked as an assistant with a group of people who were taking a qualification to be Trainers. Roughly half the group were registered blind, and half were deaf or hard of hearing. They were taking the course in order to be qualified to go out into the community (to residential homes etc) and train staff members how best to work with patients and others with the same disabilities(and to understand and work with any equipment they use).

    For an academic year we worked together in one small classroom – about 12 students, one sign language interpreter, two guide dogs, one hearing dog, two or three assistants (for transcribing and just general assistance for whatever was needed) and one teacher – and it wasn’t difficult, in fact it was one of the best teaching / learning experiences I’ve had. It took a little extra planning but at the heart of its success was simply asking the students what was needed and letting them lead the way in letting us know how best to work with them.

    I’m looking forward to reading part 2 of your series.

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  11. Great post Jane, and as the others say, I look forward to Part 2 and more.

    Very often it is the invisible disabilities that cause anguish and gain disrespect. Short of wearing a badge, arm band or flagging up the issue at the beginning of a dialogue the general public can be very insensitive.

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    1. Yes Lynn – thanks for your comment – it can be the hidden disabilities (mental health issues, hearing impairments, learning disabilities etc) which confuse people.

      Sometimes it’s the probably well-meaning but thoughtless comments which rankle. My disability means I have to lie flat for nearly all of the time, and if I had a pound for every time some person has said “aren’t you lucky, lying down all day – I wish I could” I would be a rich woman. If they swapped spines with mine for just 5 minutes they might not think me quite so “lucky”!

      Part two next week.

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  12. In my psychology degree years ago, I remember learning that people were observed at traffic lights on Oxford Street, to see how close they stood to someone on crutches compared with someone not on crutches.

    The finding was that able-bodied people didn’t stand so close to a ‘disabled’ person and the interpretation was that they were avoiding them.

    I recognise that I probably do give more space to someone on crutches – but only because I’m worried about hurting them if I accidentally bump into them.

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  13. When employing our first person who is profoundly deaf, we found getting the communication issue ‘out in the open’ helpful to all of us. Most people imagine disability problems and issues and are too embarrassed to talk about them, yet when you do half of them are fiction rather than fact and the others can be worked around.

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  14. As with many things, the reality is often far more straightforward than the anticipation – and that willingness to be open and discuss the issues honestly is key to getting it right from the start.

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