Friday, 2 May 2014

#BADD2014: Things are not always what they seem

Please take a seat, sit back & tell me what you see?

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You may see the same thing as someone else, you may see many things. 

You see perception, is a funny thing. 

Its not static, it is changeable & it is different for all of us. Our experiences, personalities, history, the people in our lives & our environment mold it, but it can also lie to us.

I have Psoriatic Arthritis, Hypermobility, Bile Reflux Disease to name but a few & I am also young.
So when I venture out into the outside world society perceives that if you are young, in general you should be “well” but this isn’t always the case. And this is the problem, no one fits perfectly into a “box”, we are all unique, disabled or not. As a result, young people with disabilities visible or not, often experience a great variety of response when venturing outside from good to down right nasty. 

I too don’t like putting people into “categories” but in the spirit of saving time & to explain how society can perceive disabled people, please bear with me.

There are people in society who are empathetic & quite often have disabled friends &/or family & so understand more than most how things are & are willing to give help if needed.

Then there are people who are oblivious to you or lack knowledge. This isn’t necessarily purposeful, we all get preoccupied with our own lives at times & if you haven’t come across a particular situation you won’t necessarily react correctly. 

Yes, often these people can be confused with those that just don’t care because they sit in the disabled seats so they can have a bit more leg room & don’t offer you the seat when you hobble on to the bus, but often although they are looking at you, they are too preoccupied with their own lives to notice those around them. This is the same when I have had to use a wheelchair & have be stepped or lent over.

This is however not ok, pre occupied or not so to these people please pay attention.

However often when they do spot you, they often ask questions & as long as these questions are not just plainly rude or intrusive most disabled people should be happy to answer them but if not please respect that. I know there are some that aren’t & that’s their choice but especially for those with invisible conditions, if we want things to improve without the need to tattoo it on our foreheads we need to communicate so that people can understand.

I have been asked many questions about why I’m using a stick or I’m in a wheelchair. When they find out I have arthritis they usually say I’m too young because its associated as being an “old age disease” as most people don’t understand there are hundreds of musculoskeletal conditions & even children can have it. I’ve even had people argue with me that it wasn’t possible for me to have arthritis because I’m young which is obviously not ok.

Then I, like many with disabilities have been given “advice” which generally the rule of thumb is if you aren’t disabled yourself best to leave well alone as not to offend. 

It has ranged from the wildly misguided to plainly offensive. With comments of have you tried glucosamine, to wrapping myself in copper (copper bracelets, insoles etc), to have you tried exercise & juicing. These won’t cure me, a healthy diet is always beneficial for anyone but to suggest that it will stop my immune system attacking itself is misleading at best & for some very damaging.

One particular topic which can also be offensive is when talking about joint pain & an able bodied person says, “me too.” Our pain is our own & it is significant to each of us but it is not the same as my immune system attacking itself.  Another is fatigue. Fatigue is not sleepiness, it’s not “I’ve only had two hour’s sleep”. It’s different for all of us but the most simplistic way I know to describe it for someone with arthritis is, if you think of when you had the flu or a really bad infection how drained you feel, that’s because your immune system is elevated trying to fight infection & for someone with arthritis they live with a immune system that “flares” up far greater than flu & a lot of other infections thus creating fatigue. 

I go into more detail about my arthritis here
 
And lastly there are some people that just don’t care, have prejudices of their own or have been influenced by the media & the Government.

In recent years the news & media have become increasingly biased, with certain newspapers writing a constant barrage of “articles” involving a tiny minority of people who have misused the welfare system. This in no way is representative of those who are disabled & never mentions that not all of those with disabilities don’t work, people do. It also doesn’t cover the difficulties that disabled people face trying to get work & how support to help has been taken away which Bendygirl mentions in her blog here.

Another example of how the disabled community is losing support is DSA. A support scheme that is being striped to the bone. Because of a misperception made from the use of a small survey of students that said most students had a laptop upon entering university & so most will now not be provided with one. Same with note takers & readers & many, many more. As someone that studied in uni as my disability got progressively worse & who is dyslexic, I can not see how this will not make it even harder for disabled people to reach their full potential & for it not to have an impact on the student’s health with the extra strain imposed. This is not as simple as “you need to try harder.” You can read more at Spoonydoc’s blog here.

The media & the government often dresses up welfare reforms as something positive, that they will help more people & improve peoples lives. But policies are mostly ill thought out, with support being removed & more people falling through the net.

But as I have covered before, something doesn’t have to be true for people to believe it, as long as it is repeated often enough, history has taught us that of course this is going to skew peoples’ perceptions. You can see my blog post here

These “stories” have impacted the disabled community significantly. From rude remarks to physical attacks. A common remark heard all too often is “I know so & so who’s faking it” on the basis that they see that person for a moment of their day.  

Because of the media & the Government’s influence, at present we have been told that there are many of these “scroungers” lurking in every neighbourhood so perception changes & we try to see what’s often not there, the two faces instead of the vase.

But rarely will you see the effort that it takes for that person to go out & what the costs are. I’m not talking about financial but instead energy & effort because disabled people still want to do things they enjoy, like anyone but the difference is we will pay for it like hell the next day. But because we enjoy it, regardless of the agony we’re in the next day the enjoyment will keep us going & make us feel normal.

But the rest of the time it is learning to pace yourself & find different ways of going about it. For example blogging,  I have witnessed many a blogger being harassed,  told they’re a scrounger & they should be working but what they don’t understand is they only see what is on their screen, the blog or the tweet but not what is going on behind the scenes. People writing from their beds using their phones & assistive software.  Having to change position from their beds to their desks & back again. And of course having no deadline so when your condition throws a tantrum you can rest. Tweeting & blogging connects us to each other & makes us not feel so isolated. 

It has also been particularly hard for the disabled community to be portrayed so badly but as a result of this distorted media, a new type of activism has formed within the disabled community, knowledgeable of the bias “news” that’s being reported we found a common bond. The community listened to those affected by the most devastating “welfare reforms” ever seen & over time produced their own reports (Spartacus Report & Beyond the Barriers) when the Government refused to. More of the media is taking notice & more people are seeing things for how they truly are.

It has made the disabled community stronger. However it has also made a certain section of the community harder on others, people saying things like “we must get on, we must not whinge.” I agree we must be strong, however we must understand that there are people that have just been diagnosed, they naturally want to be how they were before, its a loss & they’re trying to work out how to manage their condition & it’s as individual as we are  So please, let’s be kind to each other.

But to the rest of you, I would like to ask you to come to your own conclusions based on unbiased research.

So for last time I ask you kindly to look again & tell me what you see. Thanks guys :p

Acknowledgements
I would like to thank my dyslexic head for being a pain & not deciding what it wants to write. I would like to thank there for being so much stupid in the world that my head couldn’t decide what to WRITE! It took me a long time to write it & my “mutant” body did not want to co-operate so I’m sorry its late but this is how it goes some times.

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