Wheelchair Etiquette

Do you worry about saying or doing the wrong thing when you are with a wheelchair user? Here are my top ten hints for non-wheelchair users, to treat us well, be helpful and not cause offence. A word of caution though - we are all individuals, with different likes and dislikes, so what I like might not apply to all disabled people.

1. Don't assume that using a wheelchair is a negative thing.

I don't use it to upset you, admit defeat or because my condition is getting worse. I use it because it gives me control over managing my day. It enables me to make it through to bedtime without being in excessive pain or exhausted. Sometimes I use it purely to guarantee me a comfy seat. Sitting is often really painful, especially if the chairs are hard or lumpy. My wheelchair has been built and configured to give me maximum comfort and that means that after sitting and chatting to you, I can still continue my day as normal.

2. Don't lean on me or my chair.

If we're close enough that we would normally sit or stand touching each other (i.e. my husband or sons) then it's okay but otherwise, you leaning on me or my chair is equivalent to me putting my feet up on your lap. Apart from it being bad manners, my spinal injury left me very sensitive to any form of movement or vibration. Sometimes being touched or moved suddenly can really hurt or make me lose my balance.

3. Think about the language you use.

This one is difficult because everyone has different words and phrases that wind them up the wrong way. I tend to prefer labels that are accurate and I don't like phrases with negative connotations. So I call myself a wheelchair user. I am not and never will be wheelchair-bound or confined to a wheelchair. That implies that I have been superglued to my chair or tied down with straps or chains.

Personally, I don't mind the word disabled but I cringe when I hear the word handicapped. I associate a handicap with golf and I never was very good at golf. There are some words that are now totally unacceptable, e.g. cripple, but it's a bit like some of the ethnic minority taboo words... I can use it with my close family as a term of affection but if you use it, expect a very negative response!

4. Don't block main routes.

I take up more space than you do. If you are putting chairs out for a meeting or decorating a room for Christmas or laying out a shop floor, please leave a decent route around and definitely don't block exits, entrances or toilets. Especially don't block the route to the toilet!

I started out being very polite and if I couldn't get through, I just gave up but I've toughened up now and I'm more likely to barge through and scratch paintwork or knock something over. I'm not being deliberately rude when I do this. I'm transferring the inconvenience back to the person who didn't consider that they were being inconvenient to me.

5. Offer to open doors but if I say 'no thanks' it means I can see you'll get in the way.

It's good manners to hold doors open for people, regardless of disability. I sometimes really appreciate you holding the door open or even getting up and opening a door especially for me. However, many doorways are only just wide enough to get a wheelchair through and I now instinctively know when a kind, well-meaning person will actually make it more difficult for me. If I say that I can do it myself, I'm not being stubborn and independent. I'm avoiding an opportunity to run over your feet or get myself stuck.

I am quite good with doors. I will usually check behind me and hold the door open for you, if you are behind me. I'm not pointing out how clever I am. It's just good manners and wheelchair users can be polite too.

6. Don't be surprised if I suddenly stand up or walk.

Many wheelchair users can walk a bit. I can't walk very far and walking is generally painful. However, sitting down for the whole day is not good for my back or legs and sometimes, it's just more convenient to get up and do something. When this happens, there are three responses that drive me nuts!

(i) It's a miracle! Please don't look at me like a miracle has just taken place when I get up. You'll only be disappointed when I sit back down again.

(ii) She's obviously faking it! If I was faking it, I wouldn't be going to such lengths to preserve my energy and pain levels so that I can work full-time and live life to the full. I would either give up completely and claim every benefit going... or I'd just stay as I was before.

(iii) The absolute worst response is to tell me how pleased you are to see me walking for once or only using a stick, etc. I understand that you probably think me walking is a sign that I'm having a better day but you might be wrong. I might be enduring a lot of pain to walk a bit and what you are really saying is that you prefer me to be in pain so that you don't have to deal with the offence that me using a wheelchair causes you. Okay, you might not be saying that, but that's how it sometimes feels. At the very least, you are making a judgement about my health as though it's a behaviour issue and that doesn't feel very nice.

If you genuinely want to know why I change mobility aids from time to time, you could ask me in a non-offensive way, "I've noticed that you sometimes use a stick, sometimes crutches and sometimes a wheelchair and that you change around. Would you mind explaining what makes you use one over the other?"

7. In the unlikely event that I allow you to push me, please still let me help. I'm nearer to the ground and I can see what is immediately in front of my wheels. You might not be able to see what I can see or you might not be paying attention to the floor. There are some things that I really don't want you to push me through. Dog poo is quite annoying if you stand in it but if you wheel me through it, the next time I use my hands to propel myself, I'm going to get smelly brown stuff up my wrists. Glass may puncture my tyres and then it would take me hours to fix them again, assuming I can even make it home. Pot holes and drains sometimes catch my front castors, holding them fast, whilst the top half of me keeps going. I'm not keen on being thrown out of my chair.

8. If you take my photo, don't try to get the part of me that doesn't show my chair.

I have accepted my wheelchair as part of my identity. I don't strip naked for photos. I accept that I wear clothes (and others are grateful that I do). I quite like photos of me in my chair. It's part of who I am now. It's very difficult for me to take nice pics of myself in my chair, so I like it when you do. I especially like artistic photos at interesting angles. Like you, I don't like photos that make me look fat or constipated, so sometimes let me pose for a photo.

9. I like to have fun going down hills.

If you were riding a bike and you'd puffed and panted your way up a hill, you would want to enjoy the wind rushing through your hair whilst descending at speed with zero effort down the other side. Using a wheelchair is no different. It's exhausting going up hills and once I've made it to the top, I really think I deserve a bit of fun! You don't need to tell me to be careful. I'm a grown-up. I know I have to look where I'm going. I know how to steer this thing and I know how to slow it down. I haven't crashed it yet and I don't intend to. It is possible that one day I'll misjudge a hill and end up getting hurt but I am an adult, capable of undertaking my own risk assessment. I promise that if I get it wrong, I won't blame you... though I may need help getting up before I die laughing!

10. Please feel free to admire my wheelchair.

I spent ages choosing design features for my chair. I love my flashing front castors. Children love to point out my flashing castors too. They are seriously cool! I also love my freewheel and when people point out how amazing it is, they are dead right! Think about your car (if you are a car lover). If you would like someone to admire your paintwork, your driving skills, your sound system... well I like it just as much when you admire my wheels.