I like to be useful!

I’ve had a huge spike in blog visitors over the last few days and the popular post getting viewed a lot has been my representation of the McGill Pain Scale. My version is unusual because I’ve added an additional figure onto the scale – that of Fibromyalgia. It’s not a figure that we usually come across, and I found the information in one research paper which means that it’s a ball-park figure (only one sample group from one piece of research) but can still be helpful to some patients to share with others as many people still incorrectly think of Fibro’ as some sort of psychosomatic condition. It’s not. At all. There is plenty of scientific evidence to show to any doubters, but sometimes being able to show a quick piccy of the pain scale to demonstrate that the pain is scientifically ‘real’ can be a speedy and simple way to help someone to re-jig their understanding and treat Fibro’ patients with more thought.

The post is by far the most popular one to date (it includes CRPS as well). I am so pleased that fellow patients out there are finding it helpful. That is why I started this weblog in the first place, to share information and be as helpful as I can from my spot on the sofa with my laptop and my occasional brain!

I didn’t realise that a link to the post had been included on the Fibromyalgia News website, though. Not until yesterday, that is. Wow! Thank-you. That is good feedback suggesting that I’m on the right tracks and am managing to be useful. Exactly what I hoped I could do. 😀

There’s lots more to write about still, I shall keep on writing for as long as I can still be useful. Big hugs to you all, x

2013-10-27, Fibromyalgia news

2013-10-27, Fibro news

Thoughts on the international disability access symbol

There has been some talk of late about the international symbol of disability access…

accessibility

We all recognise this, right?

It’s a symbol that everyone can understand without the need for language. We all know that this wheelchair symbol does not mean ‘us’ unless we are disabled. So these symbols get used in many countries to point out disabled-specific facilities such as parking spaces, wheelchair accessible toilets, alternative doorways for the disabled, safety ‘shelter’ areas in multi-storey carparks for those who cannot take the stairs in an emergency, and so on. We all know what this symbol means – there is no confusion over where the disabled facilities are.

Nothing is ever that simple, however.

The universality of this symbol (metaphorically speaking, although aliens may well need disabled access too 😉 ) means that over time the association has been less about the facilities it was intended to represent and more about the ‘disabled’ it is now generally (mis)understood to represent. The repeated associations every time we see it mean that the symbol itself has affected our concept of ‘disability’ – Disability means being in a wheelchair. Being in a wheelchair means that you are disabled.

But the reality is that only 8% of disabled in the UK use a wheelchair.

Yes. You read that correctly…. 8%

So, yes, that means that 92% of disabled people in the UK are not in wheelchairs, and yet the symbol is now so entrenched within our cultural understanding as representing ‘the disabled’ that it’s hard, for those not already in the know, to figure out what on earth those ‘disabilities’ might be.

Assuming that a symbol for a whole population such as ‘the disabled’ is acceptable when it only represents 8% of that population, then other 8% alternatives should also seem completely acceptable to us, right??

Let’s see now…. well…. Age UK’s 2013 report of the UK 65+ age group shows that…

8% are black and minority ethnics

8% have no religion

8% have definite major depression

8% have gone without food to buy christmas presents

an estimated 7% have faecal incontinence

So, by the current disability symbol way of working we could safely represent all older people living in the UK as black and ethic minority atheists with mental health issues, a mysteriously pooey scent and a penchant for gift-giving.

Right??

Um.

No.

Because the disability symbol was never about representing “disability”, it was about letting people know where the disabled facilities are.

So what does this mean for the other 92%? And what about the part of the 8% of wheelchair users who can stand for a time? Indeed keeping muscles from wasting (atrophying) is oh-so important for those of us lucky enough to be able to do so. What are the responses from the general public when a wheelchair user walks to the back of their car to get their wheelchair out? Or when someone on crutches parks in a disabled spot? Or when someone who ‘looks’ healthy parks in a disabled spot and walks to the shops? What indeed? How is the wider population able to interpret this as within the scope of disability when they have the concept of the 8% in wheelchairs as representing us all?

How indeed.

The UK description of disability, as per the Equality Act 2010, is that you are disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

It is quite clear from this that if you can walk but your lack of arms stop you reaching your cereal in the morning – you are still disabled, if you can walk but you have a tendency to pass out at any point – you are disabled, if you can walk but the type of brain injury you have that means you can’t process information for long without becoming incapacitated…and so on. This description is what can’t easily be put into a symbol, even though it needs to be to redress the erroneous cultural belief that has resulted from the current symbol.

Ask anyone in the 92%, or in the part of the 8% who try to walk when they can. Ohhhhh we’ve got stories we could tell you! About people shouting at us, and banging on our windscreens angrily, and kicking our outstretched painful legs as they walk past. Oh yes, we could tell you so much about what it’s like to not live like the symbol and still be disabled. It’s not pretty.

Concepts got muddled about with the 2012 Paralympics. The disabled in the UK are now fairly neatly defined as either heroes or scroungers. The heroes put on fake legs and win medals, or wheel to victory, or do some kickass volleyball moves whilst sitting on the floor. They officially rock! So the public ‘know’ that ‘disabled people’ can do things, too. The ones that claim benefits are therefore seen as shirking and not trying hard enough. The concept of being disabled as a result of being chronically ill was left out of the politicians’ welfare re-jig and the resulting media onslaught, and only seems to turn up in single case stories in the media once in a while. As is how limited Paralympians can still be in their day-to-day lives. But this conversation can lead many off track. The welfare issue is indeed an issue. A massive one. And it needs to be addressed. But this post is about the symbol that has mistakenly come to represent disability itself rather than disabled facilities. There is talk of changing it to something more positive, but the core issues never get raised. Talk tends to be within the same confines. A mere variation on a familiar theme.

In New York they came up with this…

new NY disabled symbol ..and yes – look at that wheelie go! They are a person, they are living their life, they simply happen to have wheels instead of legs, right?

Uh-huh, you’ve got it! This is all well and good, but it doesn’t address the fundamental perception that disabled people use wheelchairs when, unknown to most people, a massive 92% of disabled people are not the wheelies they are assumed to be. And seeing as 1 in 5 people in the UK are disabled in some way (and that the population mid-2012 was 63.7 million)… that means that 12.74 million people in the UK are disabled, of which 11.72 million do not use wheelchairs.

If you want to redesign a disabled symbol you can ask people what they think, but most people think a wheelchair is representative of the majority. You can ask disabled people but, you know what, we’ve got used to the disability symbol, too and though we want to not be shouted at in public when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc it is hard to think outside the box when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc!

How many of us knew how many disabled people actually use wheelchairs? I didn’t. Until I read the Papworth Trust’s 2012 meta-analysis report.

So…. to create a new symbol – look at the facts, look at the figures – who are you trying to represent in the symbol? And by ‘who’ I do not mean a generic stereotypical ‘who’, I mean what types of disability need to be included to make public perception more accurate? Because we have to bear in mind that the symbol also affects the way people perceive disability itself. Personally I’d like to see something like this become the norm…

Disability symbols

It clearly shows that disabilities vary and, crucially, that they are not always visible. It could mean less distress for those of us who do not fit the minority stereotype, and it could improve many many lives by doing so.

One concern might be that ‘anybody’ could then park in a disabled bay, but we still cannot park in a disability space unless we have passed the criteria to be awarded an official parking badge, and the alternate symbol may reduce the amount of hostility and flak the walking disabled have to deal with. Similarly, disabled bathrooms are blatantly designed for wheelchair access, but also very useful for head injured people who need less processing to deal with or blind people who just don’t feel like sussing out a new public bathroom layout and would find it easier to have everything close to hand for example. ‘Disabled’ covers different things which the current minority stereotype doesn’t, and a new multi-symbol could help adjust perceptions to something closer to reality.

What do you think?

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