Fear and mobility

My old broken power wheelchair

My new power chairI have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful to my wife’s grandmother for giving it to me. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I has so far been left out of. I have a problem though. I have a very large psychological barrier to actually using it.

So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I have previously written about similar problems with using my walking stick in my blog post Embarrassed to be me, where I talked about fear of abuse as well as fear of people thinking that I use a stick to look more ill and claim extra benefits. With a chair, I have an additional fear that people will think I am trying it on because they have seen me walking. My neighbours will have seen me in various different levels of health; on my best days they have seen me stand for a couple of minutes talking, and stroll across to the car park, get on my motorbike and ride away. More often, they have seen me walk using a stick, sometimes leaning on it more heavily than others. Now, they will also see me leave the house in a chair. To people that know me it is obvious that I have a variable condition that leaves me less able to move or stay upright the more tired I am or the more pain I am in. To people that see me away from the house, I worry that they won’t understand this and will simply think that I am faking my illness to get money from the government. I also worry about abuse if I stand up from the chair for a bit – I don’t have to stay in it all the time, but some people seem to think if a person can walk at all then they should always walk.

I also have a problem using the wheelchair, and, indeed, the stick, because I tend to be stubborn about what I can do. I start out in little pain and able to stand and walk, so I insist on going out without mobility aids. It doesn’t take long for me to start falling over because of exhaustion and pain though. Sometimes I can manage more than other times, and so I can quite often be capable of walking to the village shop, perhaps with a stick, and maybe walk back again too without too much pain, but the payback afterwards is high. I should use a wheelchair in this situation because that way I won’t exhaust myself just from going out to buy milk and won’t have to spend such a long time resting to recover.

When I talked about my concerns on twitter a friend sent me a link to this blog post which summarises the problem nicely. The writer has help at home with tasks like showering and dressing, yet she tries to do these things herself anyway.

“So last Thursday, when I had to explain it all over again, I told her that I *can* do all those things, but that I had to pay a price for it. And I showed her that my wrist was dislocated because of the transfer I just made. And then she said the most wonderful thing. She said: “but if your joints dislocate when you do something, that means you can’t do it right?” And she was so right…”

The problem is that she can complete these tasks, but the result of doing so is pain or even dislocation. I can walk to the shops (sometimes!) but the result of doing so is pain and exhaustion, leaving me helpless for some time afterwards.

Today I took my new powerchair out to the local shops for the first time. It’s not far, just five minutes walk away, but it’s a big step (roll) forward in making myself use the chair. I was worried through the whole journey, worried about what people would think, but I think I am getting there. I intend to use the chair to make local trips a few more times, and then I will take it out to the protest in either Birmingham or London on the 30th. I hope I will get over my fear by then.

Related links

Embarrassed to be me

Rise in abuse of disabled people is shocking but not surprising

A new definition of being able

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

7 thoughts on “Fear and mobility”

  1. How heartbreaking it is that you have to think this way at all. It’s no business of anyone else’s how your life works. 
    I went to London on Monday and today I’m seriously contemplating calling an ambulance. We have to keep telling our stories. 

    Sue xx

  2. I was where you are about a year ago. I have ME so I look “normal”, and I’m only 26, so I too was so worried about what people would think about me. And if I dared take a few steps in front of anyone that I would get a load of abuse. I decided my only option was to just jump in at the deep end and go out in it with my partner pushing of course (it’s a manual). You know what? Nothing happened. The only people who stared were other peeps in wheels who were admiring my wheels and pointing and saying stuff to their carer, probably “I want those wheels!”.
    The bottom line is that nobody cares whether you’re in a wheelchair. They’re all too wrapped up in their own lives to bother about what you’re doing! The only person stopping you is you, and it’s totally understandable. I think it’s something we all have to go through, but once you get through your embarrassment you’ll love the freedom your wheels grant you. Jump in and enjoy!

  3. I had the same problem when I had to start using a mobility scooter (I was 17 years old at the time). I was constantly being stared at and my friends made it even worse by thinking it was ‘cool’. It was horrible. But after a while I got used to it and when I got bad enough to need a powerchair it wasn’t as big a deal.

    I now only feel the stares when I’m really tired or frustrated, other than that it feels quite natural.

    I hope you get over the initial feeling of shame soon, assistive technology can give you back so much of the freedom you lost over the years!

    I’m glad you liked my blog 😉

    Love, Nihlaeth

  4. Hi! I have felt the same way about wheelchairs, electric chairs and walking sticks ( I call canes walking sticks too!)  We must get over it! I do not care what others think as much as what I think of myself. I have lately realized that it is what it is – when I need the help, I gratefully accept it and move on…for me, there are days that I don’t need the chair and am grateful too. It’s so hard to get through our days as it is – Be kind to yourself and do not fear what others are saying – if it’s unkind – it is their loss – not your problem. {{HUGGLES}} – Nina

  5. Hi I have just found your blog via the one where you have mentioned the whole acceptance thing of disability in your post above.

    I really empathise and understand what you say here in your post.  It seems we have in common, worrying.  I read through my last comment on the above mentioned blog and couldn’t believe how many times I wrote the word worry.  Recently from talking with a friend who happens to be in the field of therapy.  She talked of Chronic Anxiety Disorder. These things always have an abbreviation and this one unsuprisingly is CAD!  Which I am looking into as well as recognising that I do worry excessively.  At the moment it seems I am worrying a whole lot more than normal.  For whatever reason perhaps my general stress levels are higher than normal but the worry you describe is so familiar to me.  Worrying about what others may think about your use of the power chair etc. sounds oh so familiar.  Logically, I know that most people are so busy getting on with their own lives and worries that they probably wouldn’t even notice anything I do.  I honestly don’t think all the bad press about disabled people in the media and the harsh propaganda that the Government and politicians in general are putting out there regarding the sick and disabled helps.  I think it adds to the worries that anyone living with an illness has generally, perhaps tipping more and more people over into the Chronic Anxiety Disorder label than ever before.  As if living sick weren’t enough to be going on with it seems we have to deal with others misconceptions due to warped reporting that in fact we are just fakers.  I know I am not, you know you are not but the thought that people would see one walk on a good day, use a cane on another, then a power chair or wheelchair another may make them think we are making it all up.  This is obviously profoundly untrue, I have ehlers danlos and you can’t make that up.  Invisible disabilities are crap, for people cannot see pain can they.  I am told that it would help when I am worrying away about everything that cognitive behaviour therapy would help, then I find myself worrying that I would get the label of having a mental health condition and once again find myself in the position where the symptoms of having ehlers danlos were ignored because I would have another label.  So instead of that I am trying really really hard to recognise when I am worrying excessively and to turn the thoughts away from that in various ways – distraction, relaxation etc.  Not saying thats the right way just what I am trying at the moment.  So I can follow your blog and read your story now which will take up some time where I may otherwise be worrying!

    Anyway I have gone on more than enough now.  I just really understand what you are saying in this post.  But would humbly urge you just to go for it and try to stop worrying about what others may think etc.  Its your life and if this gives you freedom, facilitates so much that you could not do if you did not use it,  Be brave and go for it.  Good luck.

    Right I am going to hit publish now or I won’t do it for fear that I have been over familiar or come across as patronising, or my grammar is crap alongside with my spelling, my intentions however are genuine and thank you for posting this as it helps me to realise I am not the only one’ worrying’ about the same sort of stuff.

    (By the way, I am very impressed with your blog, it is so professional and gives links to twitter etc and has so many functions that I would have no idea how to set up, but then I do have blogger which is free and therefore many limitations but wow, impressive blog)

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