Sunday, 16 January 2011

Welcome to 2011.... The Year of Fear

Traditionally, as the bells strike at midnight, we wish each other a Happy New Year.  Some people merely see this as just another day but for most of us, we reflect on the past year and strive to improve on the next one.  We dream of a better tomorrow...

For 2011, I had a number of dreams... to recover from recent surgery, build my physical and mental strength back up, continue with my Open University studies, working towards a degree in Health & Social Care, even work towards returning back to a career.

Those dreams have changed though and have been replaced by fear... fear of the unknown, fear that as a disabled person, I am a drain on society and its people like me that are a cost to the taxpayer.

Why do I have these fears? Because of the constant demonisation of disabled people by both Government and Press....

Firstly, the Government announce that the welfare system needs a huge overhaul, with David Cameron declaring war on 'benefit scroungers' and 'work shy'.....

The Press then jump on the bandwagon and more or less on a daily basis, stories cover how much benefit fraud costs the taxpayer, how benefits are used to fund exotic holidays and prostitutes.. Its enough to make you wish you simply didn't exist

This became the beginning of persecution of people with disabilities.  Propaganda and suggesting we are putting it on, and are cheating the system.

David Cameron wrote for the News of the World, vowing to "axe 200,000 benefit cheats"

From the amount that it was 'costing taxpayers', what the press didn't seem to report was that it cost £1.1bn in DWP errors. 

Suddenly, everyone on benefits is a scrounger and you find people questioning your disability, even more so if its a hidden disability.

I was born with enlarged liver and spline, rubella and jaundice.  Just before my 3rd birthday it was finally diagnosed as poly articular juvenile idiopathic arthritis, a childhood form of arthritis which is systemic and over the years has affected every joint (with the exception of neck and shoulders)... it was also a very aggressive form of arthritis and had already started deforming joints.

I was admitted immediately to hospital where I had both legs plastered to prevent further deformities and started the long journey to trying to get the condition under control.

Aged 5 I started having Gold injections and having physiotherapy, which made up one of the 3 visits to hospital every week.  My parents couldn't afford a car and my Mum would struggle with getting my buggy onto public transport.  Mostly she would walk the 4mile round trip, pushing my buggy across major roads.  They didn't even know there were benefits that they could apply for.. The information simply wasn't really given when I was diagnosed.  As the first born, my parents had a huge challenge of not just becoming parents for the first time, but looking after a child with a disability.  

After speaking to other parents, my parents applied for attendance allowance when I was approx 7yrs old (now known as DLA Care) but it was turned down.  At this point I was having to wear shoes with a floating heel to accommodate my calipers.  Due to the way I walked, the heels wore down pretty quickly and so Mum would have to get them repaired,. Often in order for her to be able to afford it, other things would have to be sacrificed.  My physiotherapist then referred Mum to a medical social worker who helped her reapply for mobility and attendance allowance..  I was awarded it but only on a yearly basis (with attendance allowance at the lower rate and mobility at the middle rate)... 

Every year my Mum had to complete the application forms to reapply and every year I would have a medical.  The medicals were done at home because it was easier for me.  During my assessment I would have to carry out tasks, show how I got up and down stairs and answer endless questions about everything, from going to the toilet to getting myself dressed.  

When I was 10yrs old, and still having yearly assessments for mobility and attendance allowance, an admin error caused my benefits to be stopped... It turns out that this admin error was the distance I could walk had been marked down incorrectly... putting metres down when it should have been feet.  It went to a tribunal and overall took a year to fight... I had the support of physiotherapists, occupational therapists and my rheumatologist.  When it was reinstated, I was awarded the middle rate of attendance allowance and higher rate mobility.  The mobility was awarded indefinitely but the attendance was still yearly 

After I had left home I made the decision not to reapply for attendance allowance, one of the main reasons being that I was struggling with my disability and the acceptance of it.  I was 18yrs old and wanted to feel like everyone else who went to college, got a job and it just felt that I was constantly being made to jump through hoops and prove my condition, even though it was permanent and progressive.

Mobility allowance made a huge difference to me, especially after it had been awarded indefinitely.  I knew my condition would never get any better.  I find it almost impossible to use public transport, especially if there are no seats at the bus stop, or on the bus.  For train journeys, if a lift or escalator is out of order, I am stuck! Although I could climb stairs, its a bit like climbing the Eiffel Tower, and then you have the risk of being pushed and knocked by Joe Public (who are usually frustrated by slowness).. It would then mean I am physically and mentally drained for at least a couple of days (and in a lot more pain)

Mobility allowance being awarded indefinitely takes the worry away.  I am able to put this towards a reliable car, which is also insured and taxed.  Without my benefit, I would not be able to afford a reliable car, let alone insurance and tax, especially if I am unable to work.

When I was 21, my condition got a lot worse and I ended up losing my right hip through bone degeneration.  The ball and socket virtually disintegrated and I ended up using a wheelchair for a year.  Surgery should have been more or less straight away but due to various problems, my operation was cancelled 3 times.  This was my first bad bout of depression and I spent 11 months in and out of hospital after having a breakdown.  I was unable to wash, dress or feed myself.  My weight had dropped to 5 stone.  Up until this point I had worked as a warehouse manager for an electrical retailer.  I had just got married and a year prior had bought first house.

Our mortgage company showed no mercy, and the payment protection we had been sold didn't cover my time off work because it was due to a pre-existing condition.  So we still had to find the money to pay for the mortgage as well as other bills.  Again a medical social worker came to our rescue and talked about DLA care component.... I talked about my previous experience with medicals and my fear of having to jump through all those hurdles again but at the same time we were struggling financially and our bank certainly wasn't interested.

With the help of the social worker, I applied.  Completing the forms was so soul destroying.  It truly puts the spotlight on your disability, reminding you of all the things you can't do... From someone having to help me out of bed, dressing me, helping me into the bath, onto the toilet or commode, preparing meals for me, helping me clean up when my hands drop a cup or glass... its depressing just thinking about it.

Being awarded the care component was such a relief.  It was backdated which at the time helped us financially and meant I got to keep a roof over our heads.

Since then it has helped buy equipment and services to help me on a day to day basis (perching stool, bathroom aids, kitchen aids, grabbing sticks, remote control sockets etc), it means I can buy prepared vegetables or on my better days, use a right-angled knife to chop vegetables.  It goes towards having food shopping delivered so I don't have to struggle at the supermarket. It means I can get help with things like chiropody, leg waxing (I have difficulty reaching legs and feet).... When I have had surgery and I'm unable to drive, it helps towards taxis or petrol for friends.

Without these benefits... well I dread to think.  I would definitely lose my independence and most certainly my sanity.  You can see the difference it makes, the things that it pays for and without those, my life would certainly be different.

Its hard enough living with a permanent progressive condition, but to then feel the long arm of the Government, slowly shining the spotlight into your eyes.  I truly feel like an outcast of society.

I appreciate there is a deficit that needs to be resolved, and yes I keep hearing the message coming from the coalition government about how much debt we've been left by Labour but its beginning to become a stuck record.  To be honest, I think this coalition government hates disabled people as much as it hates the Labour party and we've now got the Labour party sticking the boot in as well!

The Spending Challenge website set up by the coalition government showed the true feeling of some people... Some had made comments such as sterilising people on benefits and sending disabled people back to Victorian style workhouses.  What message does that send out? I can truly understand why some people are feeling suicidal... There have been times when I have felt so scared about whats to come and how I will cope.  On top of possibly losing benefits, I also have the hate of the media and society.  It also makes me believe Glen Hoddle when he suggested disabled people were being made to pay for the sins of past.

For those who think disabled people are a drain on society, I tell you this.... 

The total UK disability equipment market has been estimated at £1.46 billion for 2008 compared with £1.34 billion the previous year [1]  So before you start writing us off, think about what we bring to the economy.....

There are currently 1.3 million disabled people in the UK who are available for and want to work [2]  The problem is there is no real support network and employers attitudes towards disability need to rapidly change.  Many employers provide lip service (including government funded quangos), saying they support in order to tick the boxes but in reality put a huge amount of pressure on disabled employees when their condition deteriorates.

There are over 10 million disabled people in Britain, of whom 5 million are over state pension age [3]  The government needs to remember this because if they don't start showing support to people with disabilities, they won't get their support in the polling stations...  

[1] Key Note Market Report 2006, ‘Equipment for the Disabled’ (ISBN 1-84168-8975)
[2] Office for National Statistics - Labour Force Survey, Jan - March 2009
[3] Family Resources Survey (FRS) Disability prevalence estimates 2007/8


  1. Absolutley Wonderful. Thank you for your honesty Helly

  2. What a great post Helly, very honest and heartfelt. I wish you the best of luck.

    If you're interested, my related post can be found here -


  3. Helly this is SO well written & thought proking. I think you should be writing a regular column somewhere at a national level raising awareness and telling it how it really is - unfortunately there ARE people who abuse the system making it even more important to have the flipside viewpoint & avoid the dangers of media generalisation. xxXxx

  4. Brilliant post Helly! Thanks so much for taking part BG Xx
    "Alone we whisper. Together we shout"