Sunday, 17 August 2014

"Here, let me do that", Pride or Impatience?

Picture the scene.
I'm opening the main door to the block of flats.  It is a yale lock.
I ease my electric wheelchair as close to the door as it will go.
I lean up and insert the keys.
I put my arm back down for a few seconds (lifting my arm like that is hard and painful).
I lift my arm again to twist the keys. My other hand is ready on the joystick.
As the key turns I edge the wheelchair forward, pushing the door open, which incidentally wrenches the keys from my hand.
I move the wheelchair forward, retrieve the keys from the lock, and drive onwards to my flat, letting the door bang shut behind me.

This sounds like quite an ordeal and yes, to some extent it is. But I have been doing it for ten years and am quite used to it. On the other hand if I am with a friend then I usually chuck my keys at them and ask them to open the door. No need to hurt my shoulder unnecessarily.

I was less than impressed though when someone walked up behind me when I was half way the process. They became impatient, leaned over and grabbed my keys from the door, saying "Oh, let me do that". When I objected, they pointed out that "they could do it faster than me".
Although true they hadn't really thought things through as we were now left in a slight dilemma: they couldn't get to the door round my wheelchair and I couldn't move without running them over!

This is a typical example of the wrong way of "helping" someone. Just because you think you could do it "better" doesn't mean you should, and certainly not without warning or without consent. In this instance I was perfectly capable of opening the door. This person just got impatient.

Very often disabled people who turn down help are seen as being "proud" or having a "chip on their shoulder". It is not uncommon for non disabled people to get cross when this happens. I have been on the receiving end of abuse for very politely turning down help. (eg "Thanks for the offer but I'm fine at the moment" led to "You're all the same, you lot. Well **** off then.")

But sometimes "help" can be unhelpful.
I have had people get things down from a shelf which I didn't even ask for or want and then get angry when I politely said so. (What was I supposed to do? Buy random items strangers get down off shelves?)
When I could still wobbily walk with a stick, I had people grab me by the arm, which did more harm than good, and occasionally made me fall over.
As a manual wheelchair user, people sometimes unexpectedly grabbed my chair and tried to move or push it. This can be very frightening if done without warning!
As a wheelchair user I have also had people enthusiastically try to open automatic doors for me, or doors I didn't want to go through (including a door to a flight of stairs), but I think I am now digressing into a whole new realm of absurdity!

Moving back to today, there are some tasks which, if I am feeling well enough to do and they don't hurt me, I prefer to do myself. I don't care if I am slow or awkward doing them.
If friends or family are present I am nearly always asked if I'm sure I don't want them to do it for me.
I would stress that this is not them being overprotective. As I have a fluctuating illness there are days when I really would need their help. But if I answer that I am ok to do it, they always respect my reply and leave me to manage. (and should I change my mind half way through, they will also come to the rescue!)
This is absolutely the way it should be.

It wasn't this way from the outset. There was a learning curve on both sides after I became sick and as my disability progressed.
For my part, I had to learn when I needed help and when to ask for it. This was not necessarily a matter of pride, but a matter of relearning what I could and couldn't do.
For their part some of my friends and family over the years had to learn to respect my decision to do things, even if from their point of view it would be "easier" for them to do it.

You see, at the end of the day, I have people do lots of things for me. These are the things I couldn't do even if I tried. I appreciate that help. But to sit back and let people always do the things that I *can* do would seem very wrong and certainly completely unnecessary. Not to mention that should I do this, then I would never do anything at all.

If someone can't accept that and insists on doing something for me anyway, against my wishes, isn't that saying more about them than it is about me? Maybe it is more about embarrassment or a lack of patience on their part than an excess of pride on mine.

Monday, 4 August 2014

Disability Prejudice really does exist

I will never forget Michael Portillo's interview of disabled comedian Francesca Martinez in which she raised the issue of disablism and a hardening of attitudes towards disabled people. He and fellow panellist Andrew Neil, white, middle class, non disabled, both assured her she must be mistaken as new laws have been put into place and besides which neither of them had ever personally encountered prejudice on the grounds of disability and they both think attitudes have improved!

It is this disbelief which is so hard to fight and is so damaging as it prevents any progress being made.
It is fairly easy to find examples. Whenever an article or blog is written by a disabled person about prejudice or discrimination, you will always find comments written by non disabled people disbelieving the author.

Take for instance this excellent post "This is what disability binarism looks like" by "That Crazy Crippled Chick". It decries the ablist meme recently used by George Takei making fun of a wheelchair user who has the temerity to stand up to get alcohol from a shelf.
It describes the prejudice and sometimes even abuse encountered when a disabled person uses a wheelchair but can also stand or walk very short distances. A raft of comments follows by fellow disabled people adding their own experiences and thanking the author for her post.
This does not stop Wendy, against all the evidence and testimonies from all these disabled people, from confidently saying "I don't believe it would occur to any normal person to believe that someone in a wheel chair is faking because they stood for a few moments or moved from their chair to a bus seat."

I think this disbelief has two root causes. The first is that most people are pretty decent and will not act in an overtly malicious way. The second is that a lot of people will not recognise more subtle prejudices and discrimination or simply think disabled people should just "accept it".

As a small and petty example I personally came across, many don't see why the work or club Christmas dinner should be moved to an accessible venue "just for the wheelchair user". Instead they think that the disabled person should "accept that they can't go everywhere".
Now while I fully accept that many places cannot be made wheelchair accessible for practical, historical or even financial reasons, there is no reason not to make sure the venue for the Christmas dinner is wheelchair accessible. Yet for me, this was a yearly and completely unnecessary battle for which I was seen as an annoying trouble maker.

There are many other small passive incidents, often carried out by people who would consider themselves "disability friendly". Taken separately each is fairly small. But add them together day after day and life can sometimes become quite difficult.

Then there are the large nasty incidents. When I recount them I am usually met with disbelief or told I am exaggerating. Close on the heels of this is often a question along the lines of "What had you done?". People are unwilling to believe that non disabled people could act in this way and the fault and responsibility must therefore lie with me.

For instance I sometimes tell people that I have been sworn and spat at simply for being in a wheelchair. The response comes back that either it was my attitude or I was in a dodgy location/time of night.
In one incident I was on a family day out happily being pushed down Weymouth High Street by my Dad. Out of the blue a passing stranger spat on my legs and hissed "Freak" at me before disappearing into the crowd.
When I elaborate and explain, the response usually comes "I can't believe that". So that is it. End of conversation. People would rather believe that I am lying/exaggerating than believe that someone would behave in this manner.

When I was looking for somewhere to live and visiting flats, in separate incidents current residents told me "someone like you can't expect to live somewhere like this" and "we don't want your kind here".
When I did find somewhere to live I faced a battle to get a discrete ramp put in as apparently "it would give the wrong idea".

These are quite extreme incidents, but you can add to these the stares, the nasty comments (eg "People like you shouldn't be let out", "You should have been put down at birth", "If I were you I'd kill myself"), people getting angry when politely asked to let me get past, people running past at till queues and laughing, threats when using disabled parking (even when using a wheelchair) and on and on...

Again, if I tell people about these incidents the reaction is complete disbelief, often followed by "I have never encountered anything like this".

Well, no... As a non disabled person I am not surprised that you have not been stared at, insulted or threatened in the street, spat at or told that you are not wanted. I am not surprised that you have not struggled to get people to ensure you can access the building where meetings or social events are being held.

I am also not surprised that you are unaware of the fact that disabled people often face these battles, because most of the time we simply don't talk about it. This doesn't mean it doesn't happen. The least you can do though is not treat us as as liars, blame us, or dismiss us as exaggerating when we do raise the issue. This in itself is acting in a prejudiced manner, putting the beliefs of non disabled people over the experiences of disabled people.

Finally, even if you would never do the extreme things mentioned in this blog, it is highly possible you very unintentionally do smaller passive things which make life harder or unpleasant for disabled people.

For example, practical obstacles?
  • Do you park on the pavement or drop curbs?
  • When you put your bin out do you ensure there is enough room for a wheelchair to get past?
  • Do you make sure you look at the person you are talking to if they have a hearing impairment?
  • Do you inadvertently lean on people's wheelchairs? (highly uncomfortable and annoying)
Or more insidious attitudes?
  • Do you complain about how unfair it is that disabled people get "special treatment" or "perks"? (eg parking/benefits/work equipment)
  • Do you complain about minor changes put in place for a disabled person? (eg a change of venue)
  • Have you ever disbelieved, blamed or dismissed a disabled person when they explain how difficult something is? (eg finding a flat/disabled toilets/accessible social venues/social care)? 
  • Do you give well meaning but unsolicited medical/lifestyle advice to disabled people? Do you get upset if they don't follow it?
  • Do you get angry/hurt if a disabled person politely refuses your offer of help? (sometimes "help" is more a hindrance than anything else or really is simply not needed)

The vast majority of people do want to do the right thing. But to do that, the first thing that is needed is to listen and accept what we are saying. In my experience many people don't do that as the truth can be very uncomfortable.

Friday, 25 July 2014

Council Tax reduces Disability Care Contributions

Currently a lot of people who had previously been eligible for full Council Tax Benefit are finding themselves hit by Council Tax bills. This includes many people on very low incomes unable to simply "go and get a job", such as carers and disabled people on ESA.

There is however one silver lining for disabled people who are paying social services for their care. This new policy might be cushioned slightly by a reduction in their contribution to their care costs.

Social services are supposed to deduct the amount paid in council tax from what the disabled person pays them towards their care.

Anyone who has had a financial assessment from social services and is paying toward their care should check to see whether council tax has been taken into account. (This will normally be listed under "weekly allowances".)

(Note: see below for comments re Bedroom Tax and PIP.)


The reason behind this can be found in the fine print of the "Fairer Charging Policies for Home Care and other non residential Social Services"

Paragraph 23 states that
Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.
"Income should be assessed net of any Income Tax and National Insurance contributions payable and net of housing costs and Council Tax."
The thing to remember here is that "Income" for social services is not someone's actual income but the "eligible income", ie the income that is earmarked for care.

For instance to encourage disabled people to move into work, earnings and tax credits do not count as income. On the other hand benefits such as ESA do.
So rather ironically, someone on a salary of £50,000 pa would be said on paper to have an income of £0 per week, whereas someone on ESA has an income of over £100.

Social services cannot take as much money as they like, but must leave the disabled person with "Income support +25%".
They must also take into account essential disability related expenses, although in practise this varies wildly from council to council.
This is the "Fairer Charging Policy".

So essentially social services work out the disabled person's income and subtract

  • Any housing costs left over after housing benefit, 
  • Any council tax left over after council tax reduction scheme,
  • Earnings, tax credits etc
  • Benefits which aren't allowed to be used for care (eg mobility DLA)
  • Disability expenses

They then take anything left over (if possible) while still leaving the disabled person with money equivalent to "income support +25%".

Note: Care contributions can vary greatly dependent on what disability premiums people are eligible for and how generous councils are when taking into account disability related expenditure.
Many people don't have to pay anything. My own contribution has been as high as £96 per week and as low as £56 per week.
Ironically when I could still work and earned twice as much as I do now I didn't pay a penny!

Very Important Comment regarding Bedroom Tax

Given that social services must take into account housing costs there is a query as to whether this includes the bedroom tax for those affected by it.

The following (paragraph 23) would indicate that it should:
Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.
It could be argued that the bedroom tax is a housing cost left over after housing benefit has been paid. If so, then the disabled person's calculated "income" is lower and their contribution should either drop by that same amount (if possible) or drop to 0.
For instance if someone was paying £30pw, they would only pay £16.
If someone was paying £9pw, they would now pay £0.

Disclaimer: While I know for certain that some social services do take council tax into account (my own do), I do not know their policy with regards to bedroom tax. However given this guidance it could well be worth a query.

Comment regarding DLA vs. PIP

If social services only provide day care then they can only count mid rate care DLA as income even if the disabled person receives the high rate of DLA.
As PIP doesn't differentiate between night and day care, the new rules state that that social services are justified in counting all of PIP as income.
This means that someone on mid rate DLA or standard PIP who is upgraded to enhanced rate PIP might not see a penny of it. It could be swallowed up in care contributions.
In practise the government is leaving this to the discretion of individual councils. In the long term this means that we can expect to see a postcode lottery as to whether individuals have the entirety of their enhanced PIP award taken as a care contribution.

An Example of a Financial Assessment

A financial assessment might look something like this
Let's consider a hypothetical disabled person receiving a care package worth £140 in direct payments.
They are in the support group of ESA but are able to do 2 hours of permitted work per week for which they receive £20 in earnings.
They also receive DLA high rate mobility and mid rate care.
They receive LHA but have to top up their rent by £8.00 per week.
Social services have recognised disability related expenses with regards to their wheelchair, other specialist equipment and an alarm system in case of falls. However they refuse to take into account dietary requirements, heating and other increased costs.

Weekly Income (including DLA both care and mobility):

  • DLA Middle Rate Care £54.45
  • DLA Higher Rate Mobility £56.75
  • ESA core component  £72.40
  • ESA support component  £35.75
  • ESA Enhanced disability premium  £15.55
  • 2 hours permitted work per week (earnings)  £20
Total = A = £254.90

Weekly Allowances: (disregarded income such as earnings and benefits not earmarked for care, money set aside for disability expenditure, council tax and housing costs, amount required by law to leave to live on)

  • DLA Higher Rate Mobility -£56.75
  • 2 hours permitted work (earnings)  -£20
  • Specialist Equipment -£6.73
  • Wheelchair maintenance -£3.85
  • Alarm button service  -£3.50
  • Council Tax  -£5.76
  • Rent Top Up -£8.00
  • Weekly Allowance under 60 (= Income support +25%) -£130.31

Total = B = £-234.90

Net Disposable Income = A-B = £20
Cost of Care Package = C =£140 (14 hours of direct payments at £10 per hour)
Care Contribution = the smaller of C or A-B, = £20.

Thursday, 17 July 2014

Assisted Dying. The Slippery Slope is here already.

Lord Falconer's Bill on Assisted Dying will be debated this Friday.  This is a bill which evokes strong emotions whichever side you agree with.

For my part I do not support the bill, something I have come under a lot of attack for. Unfortunately these attacks have but strengthened my reasons,  in particular as I am condemned as having no compassion for people such as Tony Nicklinson.

I have a lot of arguments but for the purposes of this post I am going to concentrate on a single aspect: the "slippery slope". As a disabled person this is of particular concern to me.
I have been told very bluntly by strangers in the street "If I were you I'd kill myself". Acquaintances have said that they don't know how I live the way I do and others that they couldn't live if they were "like me".

So it isn't a stretch of the imagination to see that a newly disabled person could easily want to die. It takes time to adjust. But worryingly they would not receive the support they require from many people around them as even subconsciously they would be busy telling them that in their position they'd also rather die. It is a subtle form of pressure.

Of course people reading this are busy thinking "But the bill doesn't apply to disabled people".
Well no, it doesn't.
But the problem is that the "slippery slope" has already started.
Who are the people fronting the argument for assisted dying?
Who are the examples who have convinced people like Lord Carey to change their minds?
Are they terminally ill people who the bill will help?

Well... no. They are disabled people.
We have people like Tony Nicklinson. Or Terry Pratchett.
If people are campaigning and voting on the basis of these examples then in their minds they are already applying assisted dying to other people outside the law: specifically, disabled people.

I wonder what will happen if the bill becomes law but the MPs, Lords and general public then realise that it does not apply to the cases they thought it did.
What will happen when the next Tony Nicklinson comes along and cannot avail himself of the newly passed Assisted Dying Law?

Finally Dignity in Dying repeatedly says this is not about disability but just terminal illness.
So I leave you with the foreword on their website from their patron Professor Antony Grayling:
I believe that decisions about the timing and manner of death belong to the individual as a human right. This is especially relevant in cases of terminal illness, painful or undignified unrelievable illness, exhausting old age, and other circumstances where an individual might wish to make the autonomous decision to end his or her life. I further believe that it is wrong to withhold medical methods of terminating life painlessly and swiftly when an individual requests them on the basis of a rational and clear-minded sustained wish to end his or her life.
As long as disabled people are used to front the argument for Assisted Dying, as long as Dignity in Dying includes old age, chronic illness and "other circumstances" as valid reasons, I will worry about the "slippery slope" and oppose the bill.

Monday, 23 June 2014

PIP fiasco! But where was the press 2 years ago?

A little over 2 years ago, I and a handful of other disabled people wrote what is now known as the Spartacus Report.
We exposed the sham consultation run by the government into the abolition of DLA for working age claimants and its replacement by PIP.
Thousands of disabled people came together on social media in an unprecedented campaign to highlight the report and the importance of DLA in their lives.
Together, we sent the report to all the representatives in the House of Lords and all MPs.

Alarmed by the proposals and seeing the harm they would cause, we were doing whatever we could to mitigate the damage the then Welfare Reform Bill would do. Voting was still ongoing, the bill was not yet law, and it seemed there was still a chance to avoid disaster.

But we ran into trouble. No one in the media was interested. Yet the government had disobeyed its own rules. It had misled parliament. It was going to enact laws which would harm thousands of disabled people. Surely this would be enough to get the press talking?

The answer was an emphatic "No". Why? The same question came up again and again.
"Where is the human interest angle? Do you have an example? Can we talk to someone "suffering" please?"
We explained that no, no one was suffering yet, but that if nothing was done then there would be plenty of examples in a few years time. Our aim was to prevent that from happening in the first place.
The press was implacable. No sobbing disabled person? Then no, sorry. No can do.

As a lot of people know, we did eventually get coverage. This is only due to the fact that voting in the Lords swung in our favour against the government and this was, in part, put down to the impact of our report.
Questions were raised in the Commons by prominent MPs. It started to become a story.

Thanks to Baroness Tanni Grey-Thompson an amendment was added attempting to get PIP halted and a proper trial imposed. Unfortunately by now the government was desperate to avoid an embarrassing 4th defeat and the proposal was narrowly defeated by just 16 votes.
In any case it would hardly have mattered. The government invoked the archaic law of "financial privilege" to override all amendments the Lords had voted for. I have to say that this for me, was the day I realised democracy is dead.

Two years on and PIP is indeed failing. Inquiries have been launched. The Public Accounts Committee has deemed it a "fiasco" and condemned the lack of a pilot scheme, saying
"The department's failure to pilot the scheme meant that the most basic assumptions, such as how long assessments would take and how many would require face-to-face consultations, had not been fully tested and proved to be wrong."
This has resulted in "significant delays, a backlog of claims and unnecessary distress for claimants who have been unable to access the support they need to live, and in some cases work, independently".
They also revealed that claimants had been forced to turn to food banks, charities and loans.

There is no joy in "I told you so" though.
The press is now gleefully and ghoulishly commissioning articles and reports about terminally ill patients going without any support in the last few months of their lives or disabled people resorting to food banks.
While these articles need writing, I question the motives of those commissioning them. They can spare me their crocodile tears. They have finally got their "human interest" stories. Is this not what they wanted?

In my eyes they are complicit in this. Where were they when they were needed? If they really did care, they would have ensured that what the government was doing was fully reported and that the public was made aware of what was happening. Then maybe, just maybe, this whole thing could have been averted in the first place.

ADDENDUM: I would like to make clear that I do not hold individual journalists (such as the ones who have written the pieces linked to in this blog post) personally responsible for this lack of interest and demand for "tragedy". I do however hold the various newspapers and TV channels responsible, with a flawed commissioning process.

Wednesday, 30 April 2014

#BADD2014: Support and Independence

This is my submission for #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. A second submission can be found here, and is an account of my time in academia.


Attitudes towards both what is and our rights to an independent life could possibly still be one of the greatest forms of disablism we can see in our society today. Despite great strides forwards our independence is still considered an expensive luxury to be given or taken away.

For the past 17 years I have needed "personal care". This has been provided via social services in a number of ways, at first through care agencies and later through personal assistants I pay via direct payments.

I will occasionally tell people that this support has allowed me to stay "independent". This completely throws some people. Some have even laughed in my face.
"How can you possibly be independent? You need help with basic things like getting dressed, washing, cooking, heck, even cutting up your food!"

I consider this a failure to understand what independence really means. I have always made my own decisions on every aspect of my life.  This includes the small things like what I have for dinner, what time I go to bed, or simply what I watch on TV or what I do for leisure or social activities. But it has also included the big things like what job I did, where I lived, what I spent my money on, whether I went away for a weekend or holiday, and who I chose to have friendships and relationships with.

The fact I need help with basic tasks simply means I require support in order to remain in control of my life. And that is what I consider independence to be about: control, rather than trying to do every little thing all on my own.  Does it matter that someone else cooks and cuts up my food? No. What does matter is that I decide what I eat and (roughly) when I eat it.

Refusing to view me as an independent adult is, to my mind, a form of disablism. I am not considered a proper equal simply because I cannot perform a few physical tasks. Yet in every other respect and in every aspect that matters, I am living exactly the same life as everyone else. I have the same responsibilities and the same rights.

After all, to some extent everyone requires support of some kind, whether they realise it or not. For instance parents may be reliant on their child minders in order to go to work. Commuters may be reliant on their train or bus drivers. Disabled people are simply reliant on their personal assistants. The truth is that the difference between disabled and non disabled people is not really as great as people imagine.

Admittedly the consequences of removing that support are far greater for the disabled person than for the non disabled person.  Removing or even simply cutting that support could impact on the very basics of life such as hygiene, dressing and eating and would certainly prevent them from continuing many social, leisure or work activities.

This is why support is so crucial and must not be cut, even in these difficult economic times. It is vital that councils somehow continue to fund the support disabled people need. The price otherwise will indeed be our independence.

However, with council budgets being squeezed year by year,  care thresholds being raised, caps being placed on community social care, disabled children being described as "burdens", the ILF being closed down with no clear budget replacement, social care funds not being ring fenced and the rationing of care hours (eg only microwave meals allowed, women told to cut their hair to shorten shower times, only 1 shower allocated per week, removal of social activities help, removal of night time care in favour of incontinence pads, etc), it would seem that for many that price is not too high in the name of economy.
Apparently our independence is deemed a luxury, not a right.

Saturday, 26 April 2014

Mental Health Failings, a friend lost

TRIGGER WARNING: suicide, self harm
Scroll down for blog post.

A friend of mine died last night.
She committed suicide while in the "care" of a mental health unit.
She had been ill for a long time and had a long history of self harm and suicide attempts. During the past couple of years she probably spent more time as an inpatient than out.
Though I'm grieving, another overriding emotion is anger. This should never have been allowed to happen.

I had already been very angry at the care she received at a previous mental health unit.
When I visited she did not seem to be properly monitored.  Staff turnover was high, with many agency workers who did not always seem to know her needs.
Her treatment and medication reviewing was poor and sometimes postponed for over a week due to "timetabling".
She was once physically assaulted by another patient. Over another period of time she was regularly followed around by another male patient who developed a fixation on her. Staff did nothing about it.
While there she regularly "succeeded" in harming herself, badly enough to require serious ongoing hospital treatment.
She also "escaped" from the secure unit several times and then attempted suicide.

What kind of "care" is that??! If my friend wasn't safe in the mental health unit, then where could she be? What kind of "professionals" allow that to happen?

In later months, after my friend had left the area, the unit she had stayed in dramatically failed a surprise inspection and was threatened with closure as "mental health patients were put at risk". Among other things it was found that:
Drugs were “not always handled appropriately” while staff “did not always ensure that medicines were safely administered”.
Patients were “at risk of not receiving appropriate treatment to meet their needs” as vital care plans and risk assessments failed to ensure their safety and welfare.
In a way I was relieved. My suspicions were confirmed. But this surely meant that this was just one bad apple and that any future care she received elsewhere would be much better?

Now, in yet another mental health unit, my friend has once again been let down.
She wasn't properly monitored.
She wasn't safe.
But this time it won't matter what excuses are made.
It won't matter what "lessons are learned".
For my friend it is too late.