Sometimes I wish I wasn’t me. It’s hard to fight when you’re tired of fighting.
Living with a disability is
exhausting, frustrating, crushing, painful – and endless. There are so
many obstacles in my life that I would never have asked for, and
sometimes I feel so angry, hurt and frustrated that I don’t know what to
do with myself.
is not a choice. I would give anything to be able to stand and walk
unaided, get in and out of the bath without help, stand long enough to
cook a meal for my husband and myself. Hell, I’d settle for being able
to carry a cup of tea across the room!
All I have ever wanted is a
‘normal’ life – to have a job, and be a Mum. None of those
options are open to me – and it’s not my fault.
I wish society and this
government understood what it is like every single day. The energy (and
willpower) it takes to do even the smallest thing. There are some days
when I really don’t have that energy, either physically or mentally, and
it’s all I can do to get out of bed.
I know I’m luckier than a lot of
people – ‘there is always someone worse off than you’ is something I
have always be taught. I live by it, I believe it, and I’ve always done
my best to care for and help others,despite what I may be going through
I've been a Disability Rights campaigner, at different levels, (and when able), since I was eight years old. (nearly twenty six years), and I'm watching the cause I love, and passionately believe in, being set backwards.
That’s part of why I’m writing
this now – it’s why I’ve written many things. If I can make one person
understand what it feels like to live with a disability in a society
which still doesn’t accept, respect, and properly care for people like
me, then I’ve done my job.
Before the coalition came to
power in May 2010, I was coming to terms with things. I was more secure,
happy, and confident in myself than I’ve ever been in my life.
I still felt bad about the fact
I couldn’t manage a job, (I did work once before my mobility, pain and
energy levels got worse). I did voluntary work too.
There was a place in society for
me. It’s never been an equal place, but we were getting there slowly.
At least disabled people were wanted in society. We weren’t viewed with
suspicion, or labelled as ‘scroungers’, leaches accused of bleeding the
country dry, or targeted for seemingly contributing (largely) to the
I want those days back so badly.
I did not realise how lucky I was – how lucky we all were. We were
people then. We are not now, not in the eyes of the government.
We are living in fear of losing
our vital benefits and our independence. Independence (what I am able to
have of it), is a precious thing to me. I have fought to hold on to it
against all the odds.
When I was 14 years old, I had
major orthopaedic surgery in a hospital nearly two hundred miles from my
home in Somerset. My bones were broken and reset, muscles were cut, and
I had to learn to walk from scratch. My family couldn’t stay with me –
they had to go to work, and my sister to school.
There were days of agonising
physio, crippling loneliness, and the start of my lifelong battle with
clinical depression. Now, all these years later, I realise that I had to
go through it to keep myself out of a wheelchair, protect my freedom
and independence for as long as I can.
I’m terrified that the government will take that from me if my Disability Living Allowance is withdrawn. I dread not qualifying for Personal Independence Payment – even though I fight the daily pain of Endometriosis and Polycystic Ovarian Syndrome on top of everything else!
It won’t count under the‘tick box’ computer programme that they use to decide our lives. I fear
the Work Compatibility Assessment so much that I have nightmares about
it. Waking up sweating and panicking with knots in my stomach is not
conducive to a good night’s sleep, so I can’t get the rest I badly need.
I’m not alone. Thousands of
disabled and ill people across the country are living with the fear
everyday. I jump at the sound of the letter box, just in case it’s my
I don’t trust what they say
about dates, regulations and criteria for benefits anymore, because it’s
been changed so often, and those changes have been allowed to slip
under the radar – and so have the deaths of sick and disabled people who
have wrongfully been found ‘fit for work.
A growing number of sick and
disabled people are dying prematurely after being found ‘fit for work’.
Either their conditions have deteriorated or they have chosen to end
their own lives; simply unable to face either the assessment itself or a
life of poverty and hardship without benefits.
Yes, you can appeal the Department for Work and Pensions (DWP)
decision, but, due to a backlog at the DWP, as well as changes to legal aid (and who can
qualify for it), it will take ages, and for many, life will become even more impossible – and even if it isn’t,
it will feel it.
I’m lucky to have my husband and his pension to rely on so my situation is nowhere near as dire as it will be for
some who have been let down by inhumane system. Even so, I am actually
considering signing of Disability Living Allowance, because I
simply cannot live with the fear any longer.
I will have to close my bank
account and be completely reliant on my husband financially – just like
I’m reliant on him for so many other things already. I’ll hate that,
because I already feel like a burden, even though he assures me I’m not.
My precious independence will be
gone – but at least I’ll be able to sleep again, and I will not have to
fear being judged and told I am not worth supporting.
The ‘scrounger rhetoric’ and
negative media coverage has attacked what self esteem I have been able
to get for myself. I used to feel proud. I was a wife, daughter, sister,
writer and disability rights campaigner. My benefits were secure and I
all I had to worry about was finding the energy to get through the day.
Now, my old demon of not being
able to work is back, and compounded, because the ‘aspiring’ ‘achieving’
nation (and its government) hates benefit claimants – no matter how
justified we are. They do not seem to care about the affect their
policies are having upon vulnerable people in society. It doesn’t seem
to matter as long as people like us aren’t taking ‘honest,
hardworking taxpayers money’. We work hard just to get through the day!
Fighting for myself and others is now more important than ever before. We are fighting for our lives, against Bedroom Tax, the Housing Benefit cap, the closure of the Independent Living Fund, cuts in social care and so many other vital services.
Why is it that the cuts have to
come down hardest on those that need the most help? How can you call
this a fair society when we are struggling, largely unseen and uncared
for when the rich bankers (the very people who caused this mess) get
bonuses and tax breaks!
Disabled and vulnerable people
should not be used as scapegoats. It makes me sick to my stomach that we
are being punished simply for being too ill or disabled to work, no
matter how much we might want to! Blame the people who are really at
fault – the tax avoiders, the bankers and our governments for letting
I will spend everyday, for the rest of my life, fighting against this if I have to – but I shouldn’t have to. None of us should!
The Bedroom Tax will fall
disproportionately upon sick and disabled people. Whilst there have been
exemptions made for families with disabled children, those that need
overnight carers, people with adult children serving in the forces who
still need a room at home, and a few other things, disabled adults are
still not exempt.
I am one of the lucky ones,
because this particular punishment for being on benefits (that’s
essentially what many of these policies are) will not impact on me. I am
so thankful for that, because I do not think I could stand having to
leave my home. I can only imagine what thousands of others like me are
going through. They know they have to pay up or move out of a home they
may have lived in, loved, and felt safe in for years.
Where do they go? There is a
national shortage of social housing as a whole – not just the one and
bedroom accommodation that many people will need to downsize.
Homelessness is bound to rise as people cannot afford to stay (a
claimant loses 14% of Housing Benefit for the first spare bedroom, and
25% for two or more extra bedrooms) but have nowhere to go.
Each council will offer a
‘Discretionary Housing Payment’ to try and help those they consider to
be the most in need. Personally I would like to know who will make that
decision and how? It is important to realise that the pot of money
allocated to help those hit by Bedroom Tax, is nowhere near the amount
needed. People who need help will suffer even more than they already
are. I also feel that these Discretionary Housing Payments have been
I’ll say it once again. It is
not fair to make the weakest and most vulnerable in society pay for the
mistakes and greed of the rich.
Stripping disabled people of our
rights, independence and self respect is the coldest and most callous
of things any government can do and I have to pinch myself sometimes to
even believe that it’s happening in a so called compassionate, caring
I just wish it would stop. What
this government has done to us is psychological torture. We are told we
are worthless, scrounging, and lazy, day in and day out. On top of that
the fear of the Work Compatibility Assessment is hanging over us like
the sword of Damocles!
It is not fair for anyone to
live like this, and I keep thinking ‘please, somebody stop them, before
anybody else feels like they cannot carry on’ – but nobody does. I just
want a chance to live as normal a life as I can. I’m not asking for
much, just to keep what independence I have and to get my self respect
back. Haven’t I been through enough already? Haven't all of us?! If I
was face to face with you right now, I would ask you only one question –
How would you feel if this was happening to you?