Where are all the disabled people?

In the wake of several disability related stories in the spotlight in the news recently, I have noticed many people disparaging the statistics on the number of disabled people in this country.

Statistics

One statistic says that as many as 12 million, roughly one in 10 people in the UK are disabled. This statistic is constantly derided and often cited as proof that people these days are less resilient or fiddle the benefits system.
However this figure refers to people disabled under the Equality Act, ie have a physical or mental condition which has a "long-term and substantial effect on your daily life". Dependent on severity this might include certain long term illnesses such as diabetes or conditions such as dementia. This is why the figure is much higher compared to stereotypically "disabled" as the general public generally understands it, eg "in a wheelchair" or "blind". It should be noted that half of these are over pensionable age, a sign of our aging population.

Some people take this to mean that 12 million people are on disability benefits. Nothing could be further from the truth. Criteria to receive disability benefits are stringent. Benefits are given if the effect of the disability will give rise to significant costs due to mobility difficulties or the need for personal care (DLA, or Attendence Allowance for pensioners only). Another (ESA) is given if the person has become unable to work.
The number on each benefit is 3.13 (DLA), 1.46 (Attendence Allowance) and 2.15 million (ESA) respectively, with significant overlap between ESA and DLA.
NB: DLA figures includes pensioners who claimed DLA as working age people and then later passed pensionable age. 
Even here, many people disbelieve these statistics, saying it is impossible for so many people to be so sick or disabled as they don't know or see any.

Hidden disabled people

So where are we?
Well, when it comes to very sick and disabled people, many of us are hidden away. For instance, I am  mostly housebound. This is not all that unique. I communicate with the world through the internet and am in contact with many other sick and disabled people, who, like me, are rarely well enough to go out.
Those same disbelievers are the people who walk past my flat every day, completely unaware that they are feet away from one of these very sick people they think don't exist.
Some years ago I applied for the wheelchair discount on my council tax. I am so hidden away that when an officer from the council came round to check that I really was a wheelchair user, some of the neighbouring flats told him that no wheelchair user lived here. Given that I could go months without leaving my flat, they had never seen me!

Another point is that some people can be very sick but "look fine". Certain illnesses and conditions (lupus, MS, Crohns, mental illness) can have devastating, disabling and sometimes even life threatening symptoms yet which are not visible to the naked eye. You will walk right past such people without knowing it. These people are "hidden in plain sight".

As an aside it is an ironic effect of modern medicine that there are more disabled people around. While some cures have doubtless been found, it is often the case that previously fatal illnesses can be treated but not cured, causing long term disability. Similarly, previously fatal injuries and conditions are now survived but not necessarily fully recovered from.

Too many scooters!

Strangely, at the same time that people scoff at disability figures, a large number complain at the number of mobility scooters/wheelchairs in our streets. They groan that it never used to be this way and many take it as a sign that people are lazy or pretending to be disabled. Particular disdain is reserved for anyone who is overweight and "therefore" uses a scooter.
On this last point they should consider that exercise may be difficult for someone with mobility and very possibily health problems. They may also be on medication which actually causes weight gain. Cause and consequence should not be mixed!
Secondly, the fact that more mobility scooters and wheelchairs are around is something to celebrate. It is a consequence of the very hard work of the disabled generation who came before me and fought for disability access. There is still a long way to go and many problems, as was illustrated by the very recent court decision on wheelchair spaces on buses. But it has freed many disabled people to get out and about much more easily.
When people ask what these disabled people used to do, the answer is simple. They were stuck at home or even in institutions. Just because they weren't seen didn't mean they weren't there. I remind you of myself and my neighbours!


We sick and disabled people really are here. Some of us are so sick that we are hidden away. Others are hidden in plain sight. Finally, despite setbacks, we should be celebrating, not bemoaning the fact that those of us with mobility issues are better able to access society.

No More Collin Brewers

It was a horrible story but one which did not surprise me overmuch.

Collin Brewer

Collin Brewer, a Cornwall councilor, came into the media spotlight a few months ago for comments he had made in 2011 to a "Disability Cornwall" worker at a charity event, saying that "disabled children cost the council too much and should be put down."

While offensive in the extreme I'm sad to say that I know that a number of people do feel a similar way and secretly feel that maybe it would be kinder to let disabled children (and some adults) die. It is too often seen when people say that they would rather die than be disabled, or that it is cruel to let a child suffer (ie be disabled). A lot of this is due not to malice, but plain fear and ignorance, something I addressed in a previous post "Better off dead? Time to educate".
However this was rather different as this was not about the wellbeing of the child but callously purely financial considerations.

After a lengthy investigation the Independent Standards Committee ordered Collin Brewer to write a letter of apology, 18 months after the incident itself.  There was public outrage at the leniency of the punishment and the fact that a councillor with such views could remain in office.

Originally defiant, Mr Brewer gave many excuses for his comments, ranging from trying to provoke a debate, to a flippant remark, to being "hot under the collar" due to a budget meeting. Although he said the comment was a mistake and not something he believed, he also drew attention to people who supported his views, repeatedly mentioning receiving messages of support, including in particular from other councillors who agreed with him.

He eventually resigned only to stand again for re-election just 2 months later and in a shock result won by a margin of 4 votes. In a sickening twist he praised the media attention he had received, saying it had done him a "power of good", "promoting" him and making him "well known".

Disability News Service have since interviewed Mr Brewer to get to the bottom of the story. There can now no longer be any doubt about his views. He openly says that there is a good argument for killing some disabled babies. He first likens the situation to a conversation he had with a farmer who has to put down deformed lambs at birth and then bitterly complains of the burden of disabled children on the council once their parents die.

This is a free country. People are allowed to hold this view if they wish without being arrested for it. However it is difficult to see how it is possible for an elected official to responsibly and without prejudice carry out their duties which will have repercussions on disabled constituents if they consider their lives to be worthless and think they should be dead.

People are now once more protesting and calling on Mr Brewer to resign. Others are complaining that you shouldn't be punished twice and that you can't override democracy.
This puts me in a difficult position. I do not think that Mr Brewer is fit for office. However I also agree that you can't punish someone twice for the same crime, nor that you can disregard an election simply because you don't like the result.
On the other hand it may be that Mr Brewer in his joy at being reelected has said quite enough other offensive things since his reelection to warrant another resignation! The DNS article speaks for itself.

The Real Villain

In my opinion there is a villain of the piece which has not been mentioned enough and that is the Law and the Independent Standards Committee.

1. Why was a letter of apology deemed a sufficient response? Forget resignations, surely we should be able to sack politicians for such offences.
2. Why, after someone is forced to resign for such a serious reason as this, are they allowed to stand again  for reelection just 2 months later?

We need to ensure that behaviour of this sort is stamped on strongly. Our politicians need to know that it will not be tolerated and that they have a duty to properly represent disabled people (or any minority for that matter).
We need to ensure that should a politician have been found to fail in this duty and had to resign, that they are banned from standing again.
I think this is perhaps what we should be focusing on. This is what we should try and change.

Getting Collin Brewer to resign solves this particular case but will not stop it from happening again.

On the other hand if we could review and change the procedures which are in place to deal with such misdemeanors and the rules for re-election once resigned or sacked, then we could ensure that there will not be another Collin Brewer. One is quite enough.

#Beddingout: Lost Life? Busy Bed!

Artist Liz Crow is currently performing "Bedding Out". During this she takes to a bed in a gallery for 3 days to show the hidden side of disability which no one usually ever sees. It is a reaction to the current welfare rhetoric.

As part of this she organised a photo competition  #beddingout for fellow disabled people who are also house or bedbound depicting their bed and what it means to them.

This really got me thinking. I'm not a particularly good photographer, but I went ahead anyway and made the following arrangement and photo. It was more for my own benefit and pleasure than anything else and I don't intend to submit it. For one thing it is rather personal and needs a bit of explaining, which rather defeats the purpose!

As many of you may know, after 6 months stuck in my bedroom I replaced the sofa in my lounge with a daybed. This has proved to be one of the best decisions ever made and completely changed my life. My lounge is big and bright and a lovely place to spend time in.

I took the photo on a sunny day with the light streaming through the large windows onto my daybed. Most of my friends and guests don't get to see my lounge during the day, so this is a chance for you to see what I enjoy while you're not here!

I've given my photo a title (click to enlarge):

Lost Life? Busy Bed!

Many of you who know me will understand what I mean.

The left hand side of the bed shows what most people see when they think of my life: a life lost, in darkness where the wheelchair and the wolf (illness, lupus) lurk.

The right hand side of the bed is a mess! It is supposed to be! Bathed in light it shows that life has gone on, even though it is in bed. I threw on some of the things I do, all from my bed: books, games, audiobooks, sewing, laptop (and everything that allows, from campaigning to skyping to surfing the internet). Many of these things I enjoy doing with friends who continue to visit regularly.
I included small ornaments indicating interests I still enjoy, like Dr Who, Science Fiction, Science, and even my fish tanks.  The 3 pictures above the bed are ones I made myself and depict my love of wildlife and nature which I now indulge via documentaries.
I also added the toybox that my goddaughter and little sister love to play with when they come on their regular visits. Only, they don't play with the toys on the floor. Oh no! They love nothing more than to clamber up on the bed and play with me, dragging as many toys up as possible. The bed becomes a place of adventure, imagination, giggles and joy.

So yes, my life has become restricted. There is no doubt about that. I am extremely ill and I do need help and support. But at the same time life has gone on. People often ask me if I am bored. I think my bed has the answer to that!

P.S. As an aside, this is where the Spartacus Report was mostly written: in that bed, under the duvet with that laptop and a bucket load of painkillers!

"Better off dead"? Time to educate

A couple of days ago a twitter friend of mine was fed up by some frustrating things which tend to happen to disabled people periodically. She let off steam on twitter with the hashtag #heardwhilstdisabled.

This resonated with many disabled people who started to add their stories too. Before you knew it #heardwhilstdisabled was trending and continued to do so throughout the day, creating a testimony to the sort of ignorant, rude and sometimes upsetting comments disabled people too often face.
It created enough of a storm for the Independent to write about it.

Personally I recognised most of what was written. I quite enjoyed the day and reading the thread. It reminded me I wasn't alone and it wasn't my fault these sorts of things are said.

I used to get very upset by the things said to me. These days, it usually makes me laugh. The exceptions to this are things that stop a disabled people doing something (eg refusal to grant disabled access, or to serve someone) or actual violence.  For this reason I was amused rather than upset by a lot of the thread, although I accept that for some it must have made for harrowing reading.

I feel maybe I should explain my change in attitude, particularly given the anger my own examples gave rise to, in particular this one:

"If I were you, I'd kill myself" (perfect stranger, me happily waiting to cross road in powerchair on way to work) #heardwhilstdisabled

This, perhaps understandably, upset many people. I was asked how I'd reacted to it, with a number of people jokingly suggesting running him over and many saying they would have retorted it would be better if the stranger killed himself.

Rather naively I was surprised at the depth of anger and feeling. I don't feel this way and it is MY example! I admit that at the time I was very taken aback and totally shocked. But as I explained to the people on twitter what I actually did was:

I told him I loved my life and for all he knew his life was worse than mine. He didn't look happy at that! #heardwhilstdisabled

There is a good reason for this rather than my getting angry with him.

There is a flip side to #heardwhilstdisabled. Although I have lots of examples (and many more than I shared), they are spread over a period of 12 years. Over the same time  I have seen many people be friendly and approachable or go out of their way to help me, both friends and strangers.  In my experience there are friendly helpful people, indifferent people (probably the majority), ignorant sometimes hurtful people and malicious nasty people.

To the surprise of most people I class the chap who told me he would kill himself if he was like me as ignorant and hurtful, not nasty and malicious. This is someone who cannot imagine life in a wheelchair. This is someone who probably enjoys many things you cannot do in a wheelchair and cannot conceive giving them up. Faced with this he can see only one way out.

I can understand this. As I wrote in my last blog post, when I was 16 I was a sport fanatic. I remember I once foolishly and blithely said that if I couldn't play sport anymore I would want to die. At the time all my spare time was spent playing sport and I loved it. I was in France and school was hard and elitist (trust me, it is unlike anything you know here!). Sport was my escape and literally my life.

I honestly believed what I had said about wanting to die if I could no longer play sport. But strangely enough, here I am, mostly bedbound, as far away from playing sport as you can get, and with no desire to die whatsoever.

Admittedly I would never have gone up to a disabled person unable to play sport and told them that if I were like them I would want to die. There is NO excuse for that. But the feeling was there nonetheless. I couldn't think of a life without sport. I couldn't imagine coping without it.

I was ignorant but also underestimating my own ability to adapt. When the time came and I became ill, then disabled, it turned out that not only was it possible to adapt in ways I had been unable to conceive of but that life could still be quite fun thank you very much! In fact I know of people who are far more unhappy than I am.

So when faced with someone saying something like this, given enough time I feel I should tell them that
a) I enjoy my life
b) My life may be just as good as theirs
c) Everyone can adapt, including them

Now, this isn't to downplay the difficulties of being sick and/or disabled. And to get a) and b) you need the proper support and facilities otherwise life is going to be pretty awful. This is why I and many others have been fighting government cuts to social services, support and benefits.

But no one should think that someone who is disabled is automatically better off dead. There is always so much you can do, even stuck in a bed! I want to educate people on that, not simply get angry. And having stupidly thought something similar myself as a young teenager I feel maybe I can see where people are coming from and perhaps change their minds from "I would kill myself" to "I'd hate to have to do it, but I would adapt".

BADD2012: You can type, therefore you can work

Today is #BADD. No, not  "Being A Dastardly Disabled" but "Blogging Against Disablism Day".
I've known this day has been coming for quite some time.
I like blogging.
Recently I've had some really lovely comments about my blog. It even appeared in the Guardian Social page (shameless plug).
So where is my brilliant blog I hear you ask?
Nowhere.
You see, despite being able to type coherently at my laptop and therefore (according to most Daily Mail readers) perfectly able to get a job, I have been too ill to sit (sorry, lie) down and write something.
I HAVE tried.
I admit it hasn't been helped by the fact that I was assisting in the "We are Spartacus" response to the government consultation on PIP. But please note the key word "assisting", not "writing" as was the case for the Spartacus Report itself. That honour goes to the fantastic @narco_sam.
Thirty minutes of "assistance" and 3 hours of rest. This has been my schedule for the past 10 days or so.
Yet because I am able to write a paragraph like this I am judged by a large part of the population and deemed a scrounger. "You can type. You can spell. You can write well. Surely there is a job you can do?" they cry.
I would respond to this. I really would. I would explain about the pain, the memory, the concentration, sitting up (or not), wheelchairs, oxygen, bowels, seizures, emergency hospital admissions... But you see, my 30 minutes are up and I have to go and rest.

When "the vulnerable" have everything to fear.

Many disabled people are currently living in fear since the welfare reform bill became law. Some benefits are due to be replaced with stringent new criteria which mean that many disabled people will no longer qualify for support. With social services cutbacks many will be left with no help whatsoever.

I am not quite in that position. I am among what the government likes to call "the most vulnerable" (a term I personally hate and would never use). Currently in receipt of the highest levels of disability benefits and having easily passed the new dreaded draconian Work Capability Assessment I am in the support group of what is called ESA and am not expected to be able to work again. Having seen the criteria for the new benefits it is clear that even being as harsh as possible, I should easily qualify for the highest rates of these too.

With the government having promised that the reforms will see more support diverted to the "most vulnerable in our society", you would therefore think I have nothing to fear.

You couldn't be more wrong.

I currently live independently.
As I live alone I receive an extra payment called SDP (severe disability payment) which helps cover the extra costs of care and disability.
However a large portion of this and my other benefits goes to social services and in return I receive direct payments, money with which I employ carers to help me with every day tasks such as getting dressed, washed, eating, shopping, etc.
My LHA (Local Housing Allowance) is upgraded to a 2 bedroom rate so that carers or family can stay when my illness is so bad that someone needs to stay overnight.
My flat was adapted 8 years ago so that it is wheelchair friendly.

When the changes start coming in next year, all this will go.

a) SDP is being abolished completely.
b) The 2 bedroom allowance is no longer guaranteed.
c) I will continue to have to pay most of my benefits towards my care. I cannot manage without it.

I calculate that I will be around £80 per week worse off (around half from SDP and half from LHA).
At first I might be ok. Apparently there will be a transitional protection as far as SDP goes, which means I will only be £40 worse off and might be able to get that together somehow. As time goes on however, that will be eroded by inflation and benefit freezes.

The second big issue is : I cannot manage without a second bedroom.
Even if I could, there are no wheelchair friendly 1 bedroom flats available for rent privately (I've been looking). As far as social housing goes there is little wheelchair accessible housing available and in any case I am not allowed a bungalow until I am 50, ie in 17 years time!

So I either have to go into non wheelchair accessible accommodation without provision for my carer or go bankrupt!

The only other solution is for me to go into a care home at the ripe old age of 35. Ironically this will cost far more than if I were to stay put and continued to be paid benefits.

Before the election David Cameron said "If you are sick, disabled, frail, vulnerable, or the poorest in society you have nothing to fear" 


Sir, please look me in the eye and say that now.

EDIT: On April 20th the following article was published explaining that cuts in Worcestershire are to change social serices policy and would henceforth push disabled people into care homes. I rest my case.

BBC: Betraying Disabled People

As a British citizen who owns a working television I have to pay my tv license. In return I expect a certain level of service from the BBC, which is meant to be an impartial organisation.

It therefore came as rather a shock to see the latest edition of Panorama which was more worthy of the Daily Mail than it was of the BBC.  Called "Britain on the Fiddle" it showed disability benefit claimants who owned yachts, played golf and it made such claims that the DWP loses 22 billion a year to fraud and error.

The program was unapologetically sensationalist, but worse, either wrong or factually misleading.

It made no mention for instance that incapacity benefit is a non means tested benefit. It is paid to people who have faithfully paid their national insurance contributions and then become too sick to work, checked by a system which is said to be the most stringent in Europe and set to become even more difficult. It is perfectly possible therefore for someone to have savings or own a yacht yet not be a fraud. Do we, as a society, want to push people who have worked all their lives and paid their taxes and national insurance contributions into penury if they have the misfortune to become sick?

The £22 billion figure was even worse. It had no place in a program about disability benefit fraud. Firstly, it is the figure for fraud and error across ALL benefits. Secondly the figure for fraud is only £3.3 billion, the rest being government error. Yet this figure was not mentioned at all. The figure for disability benefit fraud in particular is £1.1 billion. This figure was certainly not mentioned. The general public will have come away from this program with the erroneous, misleading and damaging figure of £22 billion.
When challenged by a member of the public, the BBC all but admitted it had misled the public:
"I understand you were unhappy with the figures that were given out by this programme as you felt they were inaccurate.

I’m sorry if you felt the figures were inaccurate but what was stated in the programme was:

“22 billion pounds a year. According to the latest research that’s how much fraud and error costs the government. A significant chunk of that is benefit fraud.”

As you can see the programme didn’t state that fraud and error in the DWP cost £22 billion but rather that fraud and error overall.


Now, 1.1 billion out of 22 is not a "significant chunk" by any means. It is 5%. I expect better from the BBC, a company I pay for and is supposed to fairly represent all members of society, not demonise them.


This follows a trend from the BBC.
Over the past year it has:
Closed down the disability messageboard despite great protest and without undertaking an impact assessment.
Chosen not to cover the Paralympics.
Shown little to no coverage of the Hardest Hit marches, the largest street demonstrations of disabled people in the past decade.
Refused to report on the stories of the problems of the WCA and its impact on disabled people.
Refused to report on UNUM, ATOS and their vested conflict of interest in designing the WCA in the first place.
Not reported any disability linked questions at any of the recent party conferences even when Ed Milliband was caught out at question time and the questioner was followed right the way to the toilet to get her story!


Now the BBC seems to be crossing the line and actively attacking disabled people on benefits. This comes at a time when hate crime against disabled people is rising rapidly, when savage cuts are being proposed and hoped to be passed thanks in part to a misinformed public who wrongly believe that fraud is rife and benefits easy to obtain. The BBC should be informing the public, not joining in on a witch hunt.


Shame on you, BBC.

Breaking Promises

Yesterday saw the second major day of protests by disabled people in the Hardest Hit campaign, following the first organised last May. Disabled people from around the country and from almost all disability groups met at 14 places to make their voices heard. It is almost unheard of for so many disability organisations to unite so unanimously in this way. Indeed it is jokingly said that the only achievement of Maria Miller, minister for disabled people, has been to unite disabled people and organisations in a way that has never been seen before.

Although the number of people marching may appear small when compared to other demonstrations such as those against tuition fees, it must be remembered that for every person marching there are hundreds unable to, either because they are too ill or perhaps because of accessibility issues. I am one of them. Many disabled people are invisible and the general public and indeed the government must be reminded of this. These protests show just how bad these benefit reforms are and how scared disabled people are.

But although there was some small media coverage, most of the attention was directed elsewhere. Worse, promised interviews were cancelled at the last minute. Sue Marsh, a now well known disability activist, due to appear on Radio 5 had her show cancelled. I myself had my own telephone interview stopped.

When a single benefit cheat is discovered the media fall over themselves to splash it over the front pages. When thousands of scared disabled people take to the streets telling their stories of a broken and faceless system which is set to get even worse, there is barely a mention of it.

As an example, the Sunday Mail got into trouble for falsely claiming that thousands of children with ADHD, which they called "naughty child syndrom" got free cars though the motability system. Although they printed a correction, it is that headline which will be remembered.
Worse, they may have played a role in the change to motability rules which will have a huge negative impact on thousands of disabled people. This is what they reported on instead of the disability marches yesterday. Furthermore they referred back to their original ADHD claims without mentioning that they had been false.

The media continually prints that the government says their only goal is to make sure that the money goes to those who need it most. The fact that they are making a 20% cost cut or the fact that  people like myself, who receive the highest disability awards and are in the government's own words "the most vulnerable", face a £30 per week cut, 20% of my income, is never mentioned.

The government has much to answer for. They broke and are breaking the promises they made to protect disabled people. But the media also has much to answer for. They shape public opinion. They are the ones who control what the general public knows. What is the point of disabled people knowing the truth if it is impossible to let everyone else know? The media has a duty to inform. They are failing in that duty.

When a life is worth less

A man admits to smothering his wife with a pillow. What happens?
He is admittedly suffering from depression. But if the wife is fit and healthy, that would never be deemed an excuse and it is hard to imagine that he would walk free.
But if the wife is suffering from a progressive and terminal illness, then it is a different story.  Stuart Mungall walked free after claiming it was a mercy killing.

But here is the catch. The day before she was killed, the wife had told a nurse that she was "taking it in her stride". At no point had she indicated that she wanted to end her life. Stuart himself does not claim that she told him to do it. He simply says that he "saw it in her eyes".

At a time when many people are pushing for a change in the law to allow assisted dying, with one option being decisions rendered by the courts, is it any wonder that many disabled people are scared and worried? Warnings of a "slippery slope" are often dismissed as scaremongering. But how can they be when already today disabled people do not receive justice in the courts? As seen here their killers are sympathised with and let off the hook. The mere fact that she was facing a difficult illness and that he was struggling to care for her was enough for him to walk free.

If caring for his wife was so hard then more help should have been given. She should never have been left at the mercy of a man who either put his own wants and needs above hers and took her life for his own convenience or whose mental health was so impaired that her safety was at risk. The fact that this has now been tacitly legalised by the court is deeply disturbing.

The truth is that her life was regarded as less valuable than that of a non disabled person. Otherwise he would have received the same sentence as someone murdering their non disabled spouse. Depression would not normally excuse murder.

The judge praised Stuart's love and devotion in caring for his wife during her "difficult" illness. Astonishingly this appeared to therefore logically imply that he had been acting in his wife's best interests out of love, ignoring the fact that she evidently still enjoyed her life. However a mercy killing is only a mercy killing if the person dying has expressed a wish to die. It is not up to the family or others, including doctors or the courts to decide when a life is worth living. It is up to the person living it.

With assisted dying once again on the table and in view of this sort of case, can we really trust the courts to tell the difference and ensure no one is ever coerced or guilt ridden into this decision?
Will they really make sure the disabled person has received all possible support, including mental health intervention and independent social care to ensure the best possible life?
Will they even be able to recognise the worth and quality of life of a disabled person with very restrictive impairments?
Will they make sure the disabled person is not directly or indirectly being adversely influenced by their loved ones?
Or will their own biased views of what is an acceptable quality of life and an emotional view of the "sacrifice" of families and carers inevitably colour any judgment they might render?