Another in our series to help people feel more confident around disabled people. Slightly tongue-in-cheek this time, but still sadly very much based on real life experience, here are some things it would be better not to say to disabled people or people with long-term chronic conditions (unless you intentionally want to offend, of course!):
1. “You don’t look disabled to me” – what would you like me to do, hang a label round my neck saying “beware – epileptic”??
2. “I know just how you feel” – everybody has experienced pain at some time, but pulling a muscle playing tennis or having had toothache once does not mean you have the first clue what it feels like for every living second of your life to be dominated by relentless pain which will never go away. And feeling bit tired because you’ve done some overtime recently does not mean you have any idea how it feels to have Chronic Fatigue Syndrome.
3. “Count your blessings – there are plenty worse off than you” – I do count my blessings and I’m well aware there are many worse off than me. That doesn’t make me feel any better at all, and try living a week of my life and then count your blessings!
4. “My cousin’s best friend’s next-door-neighbour’s mother-in-law had exactly what you’ve got and she cut out eating products beginning with g and was better within a week! You should try it!” – firstly it’s unlikely she had exactly what I have, and I’m sticking to conventional medicine thank you. And no, that doesn’t mean either that I can’t be that bad then or that I must be making it all up.
5. “It’s all in your head, you know – you need to keep a positive mental attitude” – being positive can be helpful at times, but this isn’t all in my head, and no human being can be Cheerful Charlie all the time. Accept that sometimes living with a disability or a chronic condition can be a bit miserable.
6. “Poor you – it must be horrible to be so disabled – I really feel sorry for you” – most disabled people hate sympathy, but crave empathy. Understanding that things most people take for granted can be difficult for us is very different from seeing us as passive victims.
7. “Oh, you’re so brave/inspirational/marvellous” – we didn’t choose for this to happen to us, we’re just ordinary people doing the best we can in difficult circumstances.
8. “It must be terrible to be so disabled – I’d rather be dead than live like you have to.” (yes, I’ve actually had that said to me!) – my life may have some challenges, but it is just as worthwhile as anyone else’s and actually a lot of it is very good, thank you very much!
9. “It must be lovely to sit/lie down all the time.” – I’m sure it would be, given the choice. Try not having the choice and never being able to walk on a beach with the sand through your toes, run in the park with your children, go for a walk in the countryside.
10. “It must be lovely being at home all day living on benefits while the rest of us have to work” – remember that most disabled people work and aren’t on benefits. And that if you are so disabled you are unable to work at all you may need a succession of strangers dressing you, feeding you, taking you to the toilet, changing your tampon for you – would you seriously like to change places??
OK, a little light-hearted but with a serious meaning. The next blog in this series will look at 10 ways to be helpful for disabled people.
Can you think of any thing not to say to a disabled person? There must be plenty I haven’t thought of!
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Yes, the you don’t look mentally ill is a lovely one. As if a person has a certain look about them that says “I suffer depression”.
I suffered chronic fatigue in the late 90s and it was a nightmare. The doctors said, and I quote directly “Your a working mum of course you’ll feel tired…”. And no, it’s not like normal tiredness and a good nights sleep does not make you feel better but thanks for thinking of those ideas, ‘cos I never would have 😉
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It’s insulting, isn’t it, to think you don’t know the difference between just needing a good night’s sleep, and being seriously fatigued?
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Wonderful stuff … so true. We cancer patients get our fair share … e.g. a version of your point #4 “oh, my mother knew someone who had (your tumor site) cancer. She just had a minor op and never had trouble with it again.” Bully for her … that makes me feel really good about having to have 6 months of chemo, 6 weeks of RT, then waiting for a recur…!!
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Here are some things not to say to people with depression: “You just need to keep a positive mental attitude!”
No one with depression would choose to feel that way. And if she had a positive-attitude switch to flip, she’d flip it in a heartbeat.
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Of course one classic is being told to “cheer up”, for those with depression.
As I get used to walking with a stick now, it’s interesting the reactions I get from people I know – usually at the school gate – many pretend I’m not there, seeming in case I start moaning or something, and there are a few of the “such and such had that and is OK now”.
Ho hum…
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Thanks you for all your comments – it demonstrates the levels of ignorance around. And I do believe that in the main it is ignorance rather than malice, and that people who make these insensitive comments actually mean well.
Not always the case, sadly, and an upcoming blog will be looking at the rise in disability hate crime.
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I was at the Evenbreak launch where there were some truly inspirational disabled speakers. I wanted to tell them so when we met afterwards but it did cross my mind whether it would be patronising to do so.
I would want to tell anyone who gave a good speech that I enjoyed it and I think that’s the point. ‘I enjoyed your speech’ works where ‘I think it’s amazing under the circumstances’ doesn’t.
Most of the time when people do get it wrong it’s awkwardness, but that so many don’t know how to react says a lot about how disability has integrated into mainstream society.
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I had a stroke in 2005 and look normal until I start to speak (I talk “funny” now and people can’t always understand) or walk (poor balance therefore I need a walker). People who know me treat me the same as they’ve always done but strangers … I often get the “you’re so motivating” comment and because it’s said with heart, I smile, take it in and say thanks.
As James Coakes said “…so many don’t know how to react” and don’t have a disabled person their life. I look at every encounter as an educational opportunity 🙂
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I had a stroke in 2005 and look normal until I start to speak (I talk \"funny\" now and people can\’t always understand) or walk (poor balance therefore I need a walker). People who know me treat me the same as they\’ve always done but strangers … I often get the \"you\’re so motivating\" comment and because it\’s said with heart, I smile, take it in and say thanks.
As James Coakes said \"…so many don’t know how to react\" and don\’t have a disabled person their life. I look at every encounter as an educational opportunity 🙂
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Great blog. You say you’d like empathy more than sympathy – I look forward to reading your tips about how people can demonstrate that.
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Good idea for a future blog, Jackie, but some of the things I find helpful are, for example instead of asking “how are you?” which implies you just want the “I’m fine” answer (which is the one I give to that), or “are you getting better?” (people with chronic conditions will never get better), things like “how is the pain today?” or “is today a good day or a bad day?” which indicates they really are interested in the answer, and they recognise this is a permanent condition with fluctuations. I hope that helps a bit. And then moving on to day-to-day stuff rather than focusing on the pain/disability unless it’s obvious the person wants to talk about it.
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My “favourites”: “You don’t look disabled” or “You can’t be disabled; you can walk!”
Well, gee, with those psychic powers of being able to know hidden things like how much pain someone is in, you must have won the lottery four or five times already!
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Exactly! How can anyone know how another person is really feeling? And those of us who suffer chronic pain all the time go to great lengths to cover it up.
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“Really? You don’t seem disabled to me, are you sure?” No, I am making it up, it’s trendy
“How does your partner cope?” So, my disability is all about him?
“But you have a child!” What do you want? Him to be taken away from me even though I can care perfectly well for him?
“But you have a job!” Yes, yes I do. So do most disabled people!
“But you have hobbies!” Am I not allowed any then? Was there a memo I missed?
And my favourite ever that I have been asked more than once “Do you still manage to have sex?”
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People’s interest in our sex lives is quite bizarre, isn’t it? What other group of people would you approach complete strangers and ask them how they manage sex?
And disabled people don’t have children and jobs and hobbies. We are either worldclass athletes or benefit scroungers. You’re just not fitting in, are you?
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I’m narcoleptic ..and often get “ooh wish I could sleep all the time…must be lovely to nap whenever you like” Ummm yeah,it would if it meant I didn’t have to have someone else around when I want to have a bath (in case I fall asleep and drown) if I was able to cook by myself ..when I wanted and what I wanted,instead of living on cold food or ones that simply need heating up in a microwave,(not allowed a cooker in case I fall head first asleep into a hot pan on stove)if I could go out alone(too risky) or drive,or or take part in sports I used to love ..like swimming or horseriding all of which I can no longer do .Wonder how many people would like to swap now …
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People just don’t know what to say, do they? They would often be better saying nothing at all. The whole point is that you are not “napping when you like”, you are sleeping at times which are not only inconvenient but highly dangerous, and this impacts on every single area of your life.
I share your frustration, Liz. People seem to envy me because I lie down nearly all the time. Well, so could they, if they wanted to. The novelty of working, socialising, eating, shopping, being transported and doing pretty much everything else lying down would wear off very quickly. They would soon be screaming for a wheelchair. Which of course they could use, but someone who can’t sit can’t.
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My disability is something that has not been diagnosed yet, however, we are in a working progress and to say the least, it is quite frustrating.
I have walked with an odd gait since my early teens that has progressively gotten worse. In many cases I will get questions asking what is wrong, or what happened to me. I try to reply as politely as I can, however, with me not even knowing myself it can be frustrating to answer those questions. Another classic are those that seem to think they can diagnosis me themselves because their brothers wife’s sister’s friend’s husband had the same symptoms as me (as if they know all of my symptoms).
I read all these blogs about what to say/not to say to a disabled person but what does a disabled person say to others?
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That’s a great point Kim – perhaps an idea for a future blog! In the meantime, have you read “Why are you pretending to be normal?” by Phil Friend and Dave Rees? It’s a short book which helps explore how it feels to be disabled, the language we use and how we see ourselves. It’s a good read, which I enjoyed.
I hate the “what is wrong with you?” question. Depending on how feisty I’m feeling I might say something like “well, I get a bit bad tempered sometimes and I’m not very patient, what’s wrong with you?”.
The whole concept of disabled people being evaluated by how far we deviate from someone else’s idea of what “normal” means is very annoying. What a boring world if we were all the same! Let’s celebrate difference.
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The worst thing you can say to a handicapped person is: “Stay out of trouble!” I just had a physical therapist say that to me! I am a 60 year old college educated mother of a 38 year old son who has 3 college degrees and I would never even tell a little child to stay out of trouble! That is unforgivable nasty and rude as hell! !!
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Someone looked at my leg braces (AFO’s) in the grocery store checkout line and announced, “THAT doesn’t look like any fun!”
A guy on a dating website: “Your leg braces look funny, like a young Forrest Gump.”. When I commented on his insensitivity, he replied “Sorry, I didn’t think they were something you actually had to USE.”
Faceplant….
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I’ve become friends with someone who has some challenging disabilities, and i feel sad that some of these things are on a list. but I do understand how those questions and comments happen. i find myself over compensating… and I’ll catch myself, and try to not try to be so wanting to find ways of “making her feel better.”
I’m working on mindfulness when we hang out. but if there are specific things that I shouldn’t bring up or mention, I’ve told her to please asked her to smack me upside the head because I want to know. but I want to know if there are other things I should keep in mind?
are there any books I should read so that I’m not making things hard on her?
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