Disability, hope, Mama mifsud blog, Perception

Walk on by…..

I am one of the 19% of the UK population who lives with disability. Yes, that’s one in every five people live with a disability of some kind. To put it another way 11.9 million British people. Even I had no idea that the figures were so high.

The word ‘disabled’ covers a broad spectrum of health issues, and is defined by the 2010 equality act as this:  to ‘have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.’

A whole host of conditions are incorporated into disabled, from Heart problems, to chronic illness, including rheumatoid arthritis, chrohns disease, fibromyalgia, multiple sclerosis, m.e., along with many aspects of mental health and of course, amputees.

My first challenge to you, is to remember what ‘disabled’ means.

As a society we generally equate disability to permenantly wheelchair bound, partly, I wonder, due to the iconic symbol for disability that we use to signify parking and other disabled services. Having an invisible disability is totally rubbish, as not only are you seriously ill, but you feel obliged to constantly have to prove just how disabled you are to random strangers. Yes, I have been shouted at by OAP s in car parks for using my blue badge…..

Today however I am going to talk about the 56% of that disabled number that suffer with mobility problems, so that’s roughly 6 million UK people. Again for the purposes of clarity we will define ‘mobility’ as having difficulty moving around, regardless of whether that is due to a lost limb, or pain.

I am one of those really irritating disabled people, that confuses the general population. I can on day one appear normal. On day two be using a walking stick but moving at a steady pace. On day three and four, I’ll disappear and be stuck in bed. On day five I’ll be moving super slow, stopping all the time with a walking stick and other adult. On day six I’ll look normal again. On day seven I disappear again.

I have bad flare ups where each of these periods are prolonged, there is no rhyme or reason to it, simply how well my immune system is working on a given day. My immune system functions at about 30% and is overactive, so in simple terms my body thinks there’s a problem and attacks itself, causing even more problems, and high levels of pain.

Anyone that knows me well, will be able to tell you how resistant I am to being seen as disabled. I don’t know why really, I think it goes back to the perception of others. I hate being dismissed due to my outward appearance when I am so much more than that.

It’s also laziness.

It’s actually really complicated to explain the complexities of my various health issues, and how they fluctuate so much. I’m more than happy to chat to new friends about it, but Joe bloggs general public, not so much. It’s takes ages, and I have better things to be doing with my precious time that justifying being ill to random people.

I realised this weekend, that I also hide away, rather than go out in my wheelchair because of the general public.

Yes you, the great British people, suck.

For my eight year olds birthday present, me, her and my sons girlfriend went to Cardiff to see one direction. I booked it months ago, knowing that I may well be so ill that I would have to use the chair, but thought to myself, you have gotta be brave. I would never want to punish my kids because of my health. Last week I was super bad, and it was with quite a lot of nerves that my husband loaded the car and waved us off.

I spent all of Saturday and most of Sunday in the chair and it was predominantly soul destroying.

I still smiled and was my usual chirpy self, but people ignored me. 70,000 extra people descended on Cardiff, and 3 of them looked me in the eye and smiled. Three. All day. Two of them were Muslim ladies, who no doubt recognised the underdog, the unseen and feared in my face outside primark. One was a man with a beard who reminded me of my husband.

Generally speaking people glance, then frown and look away. I recognise this isn’t passive aggressive, it’s more confusion in their eyes. I’m an average woman in my late thirties, average build, average looking, wearing normal clothes, speaking normally, laughing normally. I guess I don’t fit the picture in their mind of disabled quite right, and they need a bit of time to work it out.

Those people I can handle, I get it.

It’s the thousands of people you spend your day apologising to that are irritated by your presence (that’s if they acknowledge  you at all) that truly suck. They are by far the majority.

As a mum of four, I’ve pushed many a pram, and people smile and move when they see you coming. As someone in a wheelchair you feel like the biggest blight on someone’s day. I’m not exaggerating when I say me and the girls said ‘sorry, excuse me, thanks’ thousands of times this weekend, and only a handleful responded in a pleasant way.

It won’t surprise you to know that most of the pleasant responders were children. In an early post on politics I spoke about children seeing the world in a wonderful way, valuing kindness and fairness over other traits in people. Babies still waved at me, and a little boy tried to give me his train to play with. The children I saw, being my height generally behaved totally normally. The worst categories were men 18-30, middle aged women, and any old people.

I don’t really understand what upsets older people so much about people like me? I love chatting to our ageing population and really value their role in society, but they mainly are almost cross that I’m stealing their thunder or something! The two main run ins I have had over parking were with elderly men. I often feel like hey, you got to 80 without needing help that’s amazing, don’t you feel even a little sad that I’m so young yet already need it?

I guess the purpose of this post it to highlight yet another thing we don’t really like to talk about. I am normal despite indicators to the contrary. Smile at me, speak to me. If I were walking into a bar, or sat in a cafe, or watching football, people always talk to me and respond to my chatty positive nature; don’t just ignore me because I am sat in a chair.

So today if you see someone out and about using  walking sticks or sat in a wheelchair, remember this post.

Make eye contact. 

Smile. 

If you have time, strike up a conversation as you would with any other person.

Believe me when I tell you, that split second of kindness and acknowledgement means everything.

Thank you.

Some links to bits and bobs:

http://www.livability.org.uk/news/language-journalists/.    (on disabled statistics)

https://www.gov.uk/definition-of-disability-under-equality-act-2010

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3 thoughts on “Walk on by…..”

  1. I’m really sorry you were not well for you Cardiff trip and that that was compounded by how you were regarded. In my own small way I know what you mean. For some years I have been in arthritic pain and had to use a stick. Even that changes people’s attitudes to you. Then I had my hip replacement, crutches for a while (they look at you in a better way on crutches for some reason) and now I am back to moving well for a while, until my next hip is done.
    I had experience of a wheel chair when we went on holiday last year to America including Hawaii. The contrast with how I was treated here and by BA with how I was treated by American Airlines and people in general was remarkable – so much better and without any patronising in USA, first on and off planes, friendly courteous treatment and no sense of being a pain to anyone. BA make you wait til last to get off the plane and clearly regard one as a nuisance.
    I hope you are feeling better. Know that you were missed at the Rally! All the best to you.

    Like

    1. Thanks for sharing your experiences 😄 it’s weird the crutches thing isn’t it? They signify ‘accident’ and people just accept them.The reason I changed from crutches to stick was partly wrist pain, but more to stop people asking, what have you done to yourself now! A stick signifies long term problem and I find it easier than explaining constantly that I haven’t done anything to myself, I am wholly at the mercy of my stupid body!!

      That’s interesting re America! I have to say the millennium stadium staff were awesome, really genuine and kind. I had a dedicated guy from the gate and he was sweeping people out of the way and didn’t take any nonsense, it was actually a relief to be at the gig finally. I could of done with him all day 😄 we had an amazing time despite all the difficulties, it’s all about state of mind, and I was determined my daughter would leave with amazing positive memories. These things effect me fleetingly as I’m strong and cared for, I worry more about the people that it leaves a lasting imprint on.

      Liked by 1 person

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