Ignorance, Exclusion and Invisibility: the reality of being disabled in the UK

Ignorance, Exclusion and Invisibility: the reality of being disabled in the UK

This post is written for Blogging Against Disablism Day 2014. There are lots of excellent contributions for you to read, so please take a look.


It’s the feeling of being completely invisible.

From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”

It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.

38% of people believe disabled people are a burden on society.

But these attitudes spread quickly, and seep into all parts of life.  That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.”  Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”

It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible.  Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it. 

47% of disabled people currently work compared to 77 % of non-disabled people.

I’m a wheelchair user, along with 1.2 million other people in the UK.  Last week I had an appointment at my new doctor’s surgery.  Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.”  Yet I was faced with three problems before I even reached the treatment room.  The front door was really heavy, and swung back to smack my chair while trying to get in.  The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her.  Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible.  The treatment room is at the end of a long corridor, and just before her room was another door propped open.  As I got there, the door suddenly swung closed onto me.  I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.

More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.

My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed.  That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me.  I have never had an issue getting my wheelchair through a standard width door before.  I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.

I was mortified.  I thought, ‘She’ll think I’m a bad driver!’

Only later did I think – that was their fault.  Why should I now be afraid to go to see my GP as I can’t face it happening again?

This happens time and time again.  I can’t get into the vast majority of the shops in the town I live in.  Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.

65% of people have admitted they avoid disabled people because they don’t know how to act around them.

Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within.  Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently.  How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online.  Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’

180 disability hate crimes are committed every day in this country.

While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low.  The scrutiny over benefit claimants has had consequences.  It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer,  they should then get a say over their lives.  A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives.   Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them.  Yet the public outcry to this has been minimal.  Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.

The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced.  This fear isn’t unfounded – it’s a stated aim by the government.  The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many.  The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.

The poverty rate for disabled adults in the UK is twice that for non-disabled adults.

Disabled people shouldn’t feel dehumanised, excluded and invisible.  But how do we stop this trajectory from happening, and make inclusion a priority?

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Stretching Disability Living Allowance to its Limit

Stretching Disability Living Allowance to its Limit

Yesterday I had an assessment by Social Services for Direct Payments.  I’d been waiting about seven months for it after being assessed as ‘Urgent’.  The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not.  From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all.  It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there.  So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch.  I currently use my DLA for an adapted car that has a hoist for my wheelchair.  Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price).   Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work.  So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work.  The assessors response was that I should be using it on a wheelchair.  I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that?  She had no answer.  It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit.  Exactly how far do they expect DLA to go?

wheelchair push

The Terrifying Reality

The Terrifying Reality

Imagine this scenario.

You’re need a job, but there’s a new system in place – in the form of one single interview.

You don’t fill in an application, or apply for a job that looks right, instead you sit in front of someone.  They’ve never met you.  They don’t have your CV, your history, your qualifications.  All they know about you will be gained in the next few minutes and by looking at you.  They ask you a list of questions.   They seem quite irrelevant – none allow you to explain what skills you have, what your strengths are, or enable you to sell yourself.  The interview ends, and there’s so much more you want to say, to explain.  At the end they hand you a piece of paper with your job and salary on.

You splutter at the unjust nature – how they can decide what you can do without knowing your background, just by looking at you?   They have no training in employment, or in your specialist area.  Yet they’re deciding your future.

That’s exactly what happens when assessing whether a person with a disability can work or not.

The assessor is not usually medically trained.  If you have a rare or complex condition, they won’t receive any information about it beforehand or speak to a specialist.  They do not receive your medical record, any consultants letters, etc.  They have set questions to ask they may have no baring on the condition.  It does not take into account someone who may be reasonably well one day, and bedbound the next.  Or the complexities of your situation, or the reality of your day-to-day life.

They judge you just by looking at you, which is difficult for all the thousands of invisible conditions out there.

And it’s just getting worse.

Thousands die each year after being found fit for work or other benefit cuts.

Would you want your life to be decided by someone who knows nothing about you?  Who has no training?  Just ticks boxes that do not relate to you in any way?

No?  Then why should the disabled people of Britain face this?



Atos (Photo credit: Wikipedia)


Oh, Bright New Day – We’re Movin’ Away!

Oh, Bright New Day – We’re Movin’ Away!

I haven’t updated in forever.  There is a reason for this: I moved house!

We have desperately been searching for quite some time – half looking for a couple of years, and properly trying for a year.

We had a battle with the council who puts everyone into ‘bands’ and were banding me too low for my medical needs.   This was detailed in the post When Those Who Are Meant To Help Do Not.  We finally got the right banding – but it was still totally impossible to get the right housing for me, as they all went to downsizing their properties.

Then I was awarded Disability Living Allowance, written about in the post And the results are in…, and became entitled to claim Working Tax Credit – which went my income went from pitiful to being able to contribute to the rent.

See, the thing is we really wanted a bungalow.  I struggle with the stairs, so wanted everything on the group floor, but the thing with Fibromyalgia that doesn’t get mentioned so often is trouble with noises.  It’s not all the time, but it comes over in waves and it feels like a drum playing directly on your brain, and your pain levels shoot up in response.  It overwhelms you, and you can’t concentrate on anything but the noise, and the panic rises until it stops.  So, we felt a bungalow would be good having been cursed with noisy neighbours previously.

But bungalow rental costs a lot more than a house or flat, so it was a distant dream until I could contribute.  Our ideal place was two bedrooms – with another room of some kind.  A box room, a dining room – something.  And then this place came up.  A two-bedroom bungalow with a conservatory.

We were the first people to see it (which you have to be with a bungalow) and we took it on the spot.  The living room could fit about four of my previous living rooms in.  I have this beautiful space in the conservatory for crafting, and computer work.  The bedrooms and kitchen are a little small, but the rest outweighed that.  There is a lovely enclosed garden for my cat, as well.

What I didn’t bank on was how much moving would take it out of me, for days all I could manage was a shower and then sitting on the sofa for the rest of the day.  But we are slowly getting there with the unpacking, and yesterday I put together my craft room!

My final worry is that after a year the landlord will want to sell it, but here’s hoping to happy times here.

My garden - own photo

My garden – own photo

DLA Saga Continues

DLA Saga Continues

On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.

Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre.  So they are continuing to go through with the medical despite the fact my claim has yet to be looked at.  Interesting tactics.

In other news, I’ve been signed off work for a month.  Hopefully it will help, as I’m just so exhausted at the moment.

Credit to Kurhan

Credit to Kurhan