The stark truth is that, unless you spend time in a wheelchair, it’s impossible to know how it affects every aspect of your life. People who have been forced to use a wheelchair, albeit temporarily, all say the same thing: “I never realised how difficult it is.” There is no user guide for either the person in the wheelchair or the people they interact with. I am lucky as friends and relatives have, over time, taken it all in their stride and my husband John has taken on the role of carer as if he was born to it.
I was diagnosed with MS in 1991 and by the mid 1990s my legs had deteriorated to the stage a walking stick was no longer any use and I really couldn’t get on with a Zimmer frame (especially the ones on wheels). Going out was getting harder and harder as I couldn’t walk very far and even at work there was a problem – I couldn’t drink much in the mornings as I couldn’t walk to the loo in the afternoons! So I thought, okay, maybe I should start using a wheelchair.
Accepting I needed to use a wheelchair was a big obstacle to overcome. Not only was I coping with physical changes courtesy of the MS but I also had to make a psychological shift that was just as hard, if not harder. There is the inevitable question “why me?” (to which the answer is “why not?”) and a growing sense of frustration. In the end I had a choice – take to my sofa and never go anywhere or use a wheelchair and get on with life. I opted for the latter but it certainly wasn’t easy. Sadly, there are many people who can’t bring themselves to use a wheelchair and miss out on the rest of their lives. As far as I am concerned, my wheelchair has become my legs but that doesn’t mean life is as it was before. Nothing like it.
People react differently to someone in a wheelchair. There is a general assumption that if you can’t walk you can’t think. People really do talk to the person I’m with or adopt a patronising tone as if I can’t understand. People also stare. I always smile at them, even if it resembles a rictus grin. Their reaction is then either to smile back or look away. Sadly, there are some people who are embarrassed by those of us who have to use a wheelchair. Not so children, who always smile; they simply don’t have a problem with wheelies and many is the time a young child has struck up a conversation with me, wanting to know why I am in a ‘pushchair’.
I had always been very independent so it was hard for me to accept help; these days I am very grateful if it is offered. I cannot work. I cannot go anywhere on my own. I can no longer drive, nor can I put my own wheelchair into the boot of a car. Wherever I go I have to check the access and whether there is a disabled toilet. Even after checking such things there can always be an unplanned for hazard just waiting to catch me out: perhaps there is a door that is too heavy for me to open or a ramp to be negotiated (and ramps are always steeper than they look…). John and I realised many years ago that spur of the moment trips can no longer happen. Our key to a successful trip of any kind is planning, planning and more planning.
The negative side
Life is tolerable in a wheelchair (after all, what choice do I have?) but it could be so much better. It seems to me that a person in a wheelchair is rarely consulted about their needs and many people are guilty of not being bothered (“It’s only a disabled person”). Others don’t think things through – a classic example was my local bank which, for many years, had a big step up to its entrance and a prominent sign saying “For Disabled Access Enquire Within”…
The positive side
There is the occasional advantage to being in a wheelchair. For instance, I am never without somewhere to sit. I am always amused when someone says “take a seat”, realises what they’ve said and starts to go “Um, what I meant was…” One day I arrived at a meeting to find all the seats were taken. My colleague fetched two chairs. I asked her who the second one was for and she said “It’s for you – I forgot you’re in a wheelchair.” What a compliment. People who see the person beyond the chair are to be treasured.
The bottom line
So how does it feel to be disabled, to need to use a wheelchair? No proper life, no fun, right? Wrong. What you need to understand is that it is not necessarily being disabled that prevents me from doing things. What limits me (apart from my day-to-day health) is, for instance, which buildings I can get into and which friends’ houses I can visit. Being disabled does not define my personality, it does not mean I am permanently miserable and I still have the same lively sense of humour and enjoyment of the ridiculous as I always have.
I am so much more than ‘a woman in a wheelchair’.
If you enjoyed reading this blog post, visit Elaine’s website where you can read more about her life with MS: www.wheellife.co.uk