For those of you who subscribe to our newsletter, you'll have seen our most recent email about the unfortunate presumptions, and therefore prejudice, that can surround wheelchair users. We had a strong response to this and it's something that affects many people, in many different ways. It's important to increase awareness and let every single on of you who have experienced this to know you are not alone. For this reason, we've taken the decision to include this in our blog as well, with some additional advice and helpline support numbers for anyone who is struggling.
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Contrary to popular belief among the able bodied, just because you are in a wheelchair, does not mean you can not walk.
Many conditions call for occasional or regular wheelchair use as opposed to being necessary full time. In fact in many cases, occasional walking is actively encouraged to prevent muscle wastage, pressure sores, stiffness of joints and to improve our general mental health and well-being. The more we come to rely on our aids, the more we will automatically use them, so it's important where possible to take that occasional step when and if (that's a big if!), we are feeling up to it.
So why are so many wheelchair users still facing daily prejudice and judgement when they get out of their chair? Or park in a disabled space, and then easily walk round to the boot of the car to take our their mobility aid? The unfortunate news is that is simply boils down to presumptions, and a lack of knowledge about the many different forms of disability out there. It's so important to increase awareness so that the staring and judgement stops, full stop.
Conditions such as M.E., M.S., F.N.D., and Fibromyalgia among many others are regularly interchangeable with good and bad days, which means the level of wheelchair or mobility aid usage can vary greatly. They are all characterized by periods of extreme fatigue and pain, in which case the user will have days where they heavily rely on their mobility aid. Frequently longer journeys can be tiring and exacerbate symptoms so the end of the day will be a very different picture to the beginning. On the flip side, many individuals will also have 'good days' where they are well rested and feeling up to walking or doing a little more. The good days should therefore be rejoiced and taken full of advantage of, but sadly many feel full of anxiety that they will then be judged either now, or the next time they come to use their chair. It's far too easy to think that wheelchair = unable to move legs. The reality is that most wheelchair users have some ability to stand or walk, but often not enough to be able to get on with life. Wheels are the stepping stone that will allow someone to shop, socialise, and work, and should not be confused with the ability to stand, or walk short distances.
Invisible illnesses can be very hard to explain to anyone who has never has any experience of it. It's important to remember its no-one else's business but yours, those who matter won't mind, and those who mind don't matter!
We asked what your experiences are with presumptions and prejudice, and if you had any advice for anyone struggling. Here we have included some of our responses:
With regard to presumptions, etc, I have to use a scooter all the time. I have had quite a few incidents of people just reaching over me, even trying to shove me aside. or jumping in front of me in queues. I reckon a scooter or wheelchair often renders the user invisible. I've also had comments about "benefit scrounger", despite the fact that I have had to buy my own equipped car, scooter and other aids because the civil servants don't know or care what disability is, they just want to cut payments. In fairness most folk are kind and helpful. As ever, it's the few.On those occasions of adverse treatment or comment, i either ignore the ignoramuses completely or I have sometimes said, I hope a member of your family never get into these problems. They can't look forward to your help, can they? - Mick Lewis
It's the staring that's sometimes the hardest. I have good days and bad days, and whilst people are often understanding on the bad days, bizarrely I face judgement then when I'm having a good day. As if I need to choose one side or another. The anxiety I feel when people are staring because I've walked a short distance, when yesterday I was reliant on a wheelchair, can be as bad as my disability itself. I think it's important to increase awareness that there are a lot of disabilities with symptoms that are not constant, and vary day to day. Just because I could walk this morning, does not mean I am 'faking it' this afternoon when I need my wheelchair' - Anonymous
The best advice I have is to actively encourage conversation. People can be judgmental due to lack of understanding. I will do my best to initiate a conversation with anyone I see staring, and often they get embarrassed and will take the time to listen. On the odd occasion I have been insulted or laughed at directly, I don't ignore it. Staying passive won't help anything change. I try not to get angry or defensive, but state my disability and explain it as patiently as possible. Hopefully some of what I have said will go in, even if they don't acknowledge it. - Jay Barnes
There are several helplines with support for anyone who is struggling with their mental health due to unwarranted prejudice. If you are having a hard time, please reach out and talk to someone:
Charity providing support if you have been diagnosed with an anxiety condition.
Phone: 03444 775 774 (Monday to Friday, 9.30am to 10pm; Saturday to Sunday, 10am to 8pm)
Men's Health Forum
24/7 stress support for men by text, chat and email.
Confidential support for people experiencing feelings of distress or despair.
Phone: 116 123 (free 24-hour helpline)
Emotional support, information and guidance for people affected by mental illness, their families and carers.
SANEline: 0300 304 7000 (daily, 4.30pm to 10.30pm)
Textcare: comfort and care via text message, sent when the person needs it most: www.sane.org.uk/textcare
Peer support forum: www.sane.org.uk/supportforum