“Perhaps. Not yet but in the future. When I’m ready to face the complex issue of looking like a fake when I get up and walk.”
This was an answer given when I suggested to someone with chronic illness that a mobility scooter would help overcome some of the problems with walking. It’s a sad indication of the judgement by society that affects so many people who could benefit from mobility aids.
Unfortunately what other people think of us is something that keeps many people from accepting that they need help. I myself delayed using a wheelchair for a year or more after I really needed one because I was scared of looking different, scared of being accused of using it only to get sympathy or benefits. In delaying my use of it I no doubt subjected myself more pain and more time stuck in bed recovering than I would otherwise have endured, and prevented myself from doing as much as I might have done.
The problem of being thought of as a fake when standing up from a scooter or wheelchair is a particularly pervasive one. The common assumption amongst the general public is that people are “wheelchair bound” or “confined” to a wheelchair because they cannot walk. Full stop. Of course there are people who cannot walk at all but it is usually not the case. Much of the fuss around the introduction of PIP to replace DLA is that the maximum distance you can walk before help is withdrawn has been reduced from 50 metres to just 20. For those that haven’t thought that through, it should be obvious that you could therefore see someone walk 20 metres or even 50 metres who still gets help to move around. If that seems unfair, think about how you would get through your day if you could only walk 50 metres in one go. For those who are chronically sick they often could walk if they had to but are rewarded with pain, exhaustion and eventual collapse. Because of the stigma around mobility aids they often put up with this until such a time as trying to keep walking ends up confining them to bed in perpetual recovery. In fact, when they finally give in and accept their need for help, far from being “confined” to a wheelchair they are actually freed up by it to go further and to do more. As a result of not wasting energy on trying to walk most of the time they have more energy to stay out and interact with people.
My use of a wheelchair actually means that when I do need to walk I can do so relatively easily as long as I don’t overdo it. The problem is that to an ignorant observer it looks like I was faking my need for help in the first place when instead I can only get up at all because I was using the wheelchair. (Although one of my symptoms is that after prolonged sitting my muscles feel like they seize up and I end up quite wobbly when I try to stand, at least for a few minutes.)
The same judgement affects people who have a Blue Badge entitling them to use a disabled parking space. (I hate that name. Mobility parking space maybe?) The use of a car and a parking space near to their destination may well mean that they can walk the short distance from car to destination without apparent signs of struggling and so passers-by jump on them and accuse them of faking it. If they did not have the car and the parking space they would probably have visibly struggled to walk the greater distances between public transport options and their destination.
If you have read this far then you are probably already convinced but the message I would like people to take away is that you don’t see everything about a sick or disabled person. You don’t see the pain and the recovery time after they have done something without apparent struggle and you don’t see what they would be like if they did not have the use of mobility aids or help from others. Don’t judge, not least because one day it may well happen to you, and if you see someone else judging, set them straight.
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I generally use “blue badge parking space”. Does exactly what it says on the tin.
An excellent post, I’m with you 100 percent. Thanks for writing this! Sometimes I get out of my wheelchair and use it as a walking frame so I can let it bear my weight and help with my balance. And that challenges people’s expectations too.
So true. I struggled on with a cane before accepting crutches. That taught me to accept the wheelchair and wheelie-walker with thanks. Anyone who thinks I’m a faker just needs to see me get up after more than a few minutes seated and make immediate contact with the ground! I’m awkward and will take on the fight, but I know I’m in a minority and that makes me sad for other people. Your final point is my eternal crusade. People wonder why they should care about ‘my’ durability problems. Well MS want in my life plan, so who knows what their life plan has in store.
Such a good post. I too have to use a wheelchair if I can’t use my prosthesis that day or for a part of the day. I also have to use it even if I have got my “false leg” on if we are going any distance. I don’t do distances - they hurt! I’ve also got a scooter and use that if we are going long distances near home - the local Asda or Tesco - it’s too heavy for hubby to lift into the car as he too is disabled.
Sometimes I can’t wait for the warmer months so that I can wear a pair of cropped trousers so that people can SEE that disability as they can’t see the others.
Totally agree with the post. I’m currently in the process of weighing up the pros and cons of getting my first mobility scooter, and this is one of my decisive factors. I can walk short distances with a stick (and am seriously considering a frame), and often end up having to really push my abilities and pain levels to complete even the shortest journey, but know that there are those who see me who assume that I’m already faking. I’m sure for some the sight of me with a scooter would just put the nail in the coffin, but some form of powered propulsion would make my life, and what I can access, so much better.
Great post.
After I had spine surgery in 2012, I hired a manual wheelchair to attend the Discworld Convention that year - 5 days of walking around a very large hotel was not going to be possible at all. I was amused by how many friends & acquaintances asked my husband, when I wasn’t around, why I was in a chair rather than asking me directly - not sure who they were more concerned about embarrassing, me or themselves.
That long weekend of chair use convinced me that I will be able to cope with large events and going places much more easily if I use a chair (powered for preference as the fibro means my arms ache all the time as well). Anybody who looks at me accusingly or says anything when I stand up etc will simply get “the Paddington Hard Stare”. I haven’t bought one yet, the house is not easy to access with a chair so it is on the market & hopefully we can find a suitable bungalow. But I will be getting at least a manual chair before August (and the next Discworld Convention), finding volunteers to “push me around” won’t be difficult.
Anecdotally, I know a lady who is harrassed at the school gate (she’s a parent) by some of the other *parents* who don’t believe she has anything “wrong” with her. I believe that they were all at the same school years ago and were bullies then as well. The bullying (name calling and verbal abuse) hit new heights when she turned up on a mobility scooter to collect her child. She has spoken to the Head (“Not the school’s problem”) and the Police (who did not take it seriously at all, apparently grown ups don’t bully other grown ups in their world). I haven’t seen her for a few months, so I am not sure how things have progressed. I must attend the next FMS support group and see if I can catch up with her.
Excellent post.
Excellent post. People are now actively “on the lookout for fakers” thanks to the tabloids, TV and government diversionary tactics. More awareness of fluctuating condition needed.
Shared on my tumblr http://livingwithdisability.tumblr.com/post/85716551453/looking-fake-when-i-get-up-and-walk
Good post. I succumbed to a mobility scooter last year. No regrets. I wrote about my reasons (with pics) here: http://abilityforagility.blogspot.co.uk/2014/05/why-do-i-use-wheels.html
The public would not care less about the disabled walking or not walking or in wheelchairs or mobility scooters and then getting up and walking, if all benefit admin was replaced entirely with a universal non-means tested citizen wage, and then the politics of spite and envy would end.
It would be funding neutral from the half a trillion in stealth taxes we all pay, in or out of work, and especially the poor who spend all of their money, unable to save a penny.
The most admin costs of welfare costs around £100 billion a year. So that’s saved the money pours into the economy helping to create jobs.
What is also funding neutral and not a benefit is the state pension at 60, which is from the well in funds National Insurance Fund that has not needed a top up from tax for decades. The ring fenced NI Fund is not a tax and cannot be emptied to pay off the national debt as wrongly believed even by the Pensioners Convention, nor used for general expenditure by government.
Hope you might care to share on your personal social media to family, friends and colleagues my petition, not changing the Coalition, but Labour so as to give them the grey vote and make them a majority government in 2015, instead of a minority one to be suffered by all parties as 2015 will see the lowest voter turnout in UK history.
https://you.38degrees.org.uk/petitions/state-pension-at-60-now
All ages signing my petition, helps change Labour and given them a landslide victory.
My petiton includes the lowest waged men and women, who are losing state pension for life. And people turning 80 from April 2016, losing the only state pension they will ever have.
The Flat Rate Pension is not more but less and the greatest threat to the existence of the state pension in its history since the turn of the 20th Century.
https://you.38degrees.org.uk/petitions/state-pension-at-60-now
That’s the old, “you look all right to me,” line. Still, even worse is the case of many with mental health issues. Let a neighbour see you weeding your own garden and they will promptly assume that weeding for an hour on a good day goes to show that you could hold down a full-time job.
It’s just amazing how many consultant psychiatrists there are behind the lace curtains.
People without a disability, always expect a disable person to have one or more limbs missing. Get out a car with a Blue Badge with two legs and watch the sneering looks pass over people faces. If you are disabled, you’ll never find peace from arseholes
So right ,there is no political will to change this because ” disabled scroungers ” are an easy target.I would like any of these smooth talking liars to live my life one day.I’m applying to get a wheelchair and am tempted to get scythes put on the wheels,lol.