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