Friday, 12 December 2014

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.

Monday, 8 December 2014

Wheels on the bus

The Court of Appeal has overturned a court ruling which said that First Bus's policy of not requiring passengers to make way for wheelchairs in designated bays was unlawful.
Specifically Doug Paulley had taken the case to court after he was denied access when a mother refused to wake her sleeping baby and fold her buggy to allow him to board.

As seen by reading the BBC comments, feelings run high on this issue and there are many misunderstandings and some quite frankly silly questions.

  • It is disgraceful that a paying passenger be forcibly removed from a bus for a wheelchair user.
No one was saying this should happen. If the bus is full, then the bus is full. However, if the wheelchair bay is taken by a buggy, then this should be folded up to allow the wheelchair user to board.
The original ruling said that the company should require parents to do so. The new ruling says that parents can choose whether or not to comply with a request, potentially leaving wheelchair users behind even though there is room on the bus.


  • Babies are just as disabled as wheelchair users and have just as much right to the bay.

Babies are not (generally) disabled and with the assistance of their parent, have far more options than disabled people. Disabled people cannot usually get out, fold their wheelchair and go and find a vacant seat. Parents and their babies do have this option. I would however hope that someone might help them hold bags/baby/fold buggy and give them a seat if there is standing room only.
The exception to this is for disabled children/babies who cannot leave their buggies.
It is worth noting that parents used to use buses long before there were disabled bays. These are a necessity for wheelchair users as opposed to a useful convenience for parents.


  • It is wrong to expect a mother to stand with the baby in her arms just so a wheelchair can come on board.
There is no reason for this to be the only possible outcome. If there is only standing room available one would hope that other passengers would do the right thing and offer the mother their seat.

  • And what if another wheelchair had been on board? Will you sue every time you can't get on board the bus?
No, of course not. If the wheelchair space is taken by another wheelchair, then tough luck. The bus is "full". In this case, just as for non disabled passengers, you wait for the next bus. No one has ever suggested otherwise.
This isn't simply about the space being taken and having to wait. This is about the space being taken by a non disabled person who *could* move out of the way but doesn't want to.

  • Disabled people want equality but don't like being treated equally! 
Disabled people want the equal opportunity to travel. If the bus is full then they will catch the next one like anyone else. But this is not what we are talking about here. There IS room for the wheelchair user. They are being prevented from boarding because a passenger won't move out of the way.
What would a non disabled person do if someone stood in the doorway and refused to get out of the way?!

  • This is no big deal. Disabled people can just catch the next bus!
The problem with this argument is that it is circular and keeps happening. The next bus often says exactly the same thing! Where I live I can often expect to wait for 3 or 4 buses before I am allowed on board.
The end result of this ruling means that although the buses are physically accessible, in practise they are not as I STILL cannot get onboard.

  • It doesn't matter as I never see wheelchair users on buses anyway!
Well quite. Perhaps now you see why. I don't use buses because of this very issue.

  • This should never have gone to court. It was just some militant guy trying to get some money.
I don't know the claimant and cannot comment on his motives. What I do know is that many disabled people, myself included, were waiting for the outcome of this ruling with high hopes. In my case I will effectively continue to be barred from using buses in my area.

Wednesday, 26 November 2014

Disability vs Sickness, yet again.

There have been a number of blog posts recently either highlighting the divide between sickness and disability or calling for more unity. This has not been very successful and a number of the issues are, in my eyes, very well explained in the research paper "Why talk of illness entrenches discrimination" (Aug.2014, pay to view) by Liz Sayce from DRUK.

It assumes sick people only seek compassion, pity and being relieved of the duty of work. They have abandoned the social model and the need for support and removal of disabling barriers. It further goes on to assert that the recent welfare battles to ensure that some sick people are not forced into work when it is inappropriate is damaging to disabled people.

This paper illustrates perfectly how many disabled people feel about people who are sick. They are embarrassed by them. They make disabled people look bad. Employers should feel that disabled people can work just as well as non disabled people. It is damaging to "the cause" to mention that some people, as a result of their impairment, will either not be able to work, or will need to work part time or in a different way to others.

It is completely wrong to assume that everyone who identifies as "sick and disabled" doesn't need or believe in the social model. It is fair to say that many believe that it could be refined so as to better take impairment into account, while others say that it already does and that it has been misrepresented by some who take it to extremes.
The barriers in life for sick and disabled people tend to be less tangible than, say, the straightforward access requirements for a wheelchair user. Someone who is housebound might need their GP to offer them email access or telephone consultations. In the world of work, adaptations might include flexi-time, working from home, payment on results instead of hours, part time work, regular breaks, job sharing and many other such arrangements.
Yet even when sick and disabled people campaign for such practices to be more widespread they are met with anger from "old school" disability groups who, again, feel that this promotes discrimination by casting a bad light on "disabled workers". Yet these adaptations are just as necessary as a wheelchair ramp and the world of work is a distant impossibility without them.
Furthermore this impacts on many disabled people who would benefit from such improvements. It is not so simple a division as sick disabled people to one side and healthy disabled people to the other. Symptoms such as fatigue and pain for instance are not limited to illness.

But sometimes even with all the support in the world it will be impossible for some individuals to work. Please note that I say "individuals". Care must be taken not to imply that large groups of people with a certain diagnosis or impairment, rather than individuals, should automatically be assumed not to be able to work.

Main reasons for not working might include:

  • The number of hours you can work being so few, or your reliability being so poor that working is completely economically unviable. In my case for instance, after 17 years of a deteriorating illness I was down to roughly 1 hour a day in a good week, and some weeks none at all. 
  • The effort of working making the illness unbearably worse or even endangering health (this happened to me). This relates back to my first point as decreasing the number of hours to a point where it would not impact on the illness to an unreasonable or dangerous point would render the job economically unviable.

These are not pleasant positions to be in. Losing your career is a very difficult stage of your life and there is very little support for it. Instead there is condemnation, even from some in the disabled community. But the fact that some individuals are not able to work will always be true and cannot be hidden away, however inconvenient it is. At this stage the support required moves from removing barriers in the workplace to a financial one.
I don't believe this is seeking compassion or pity. In fact I still believe this is a social model viewpoint and that it is simply the type of support required which has changed. Without that financial support everything else will fall apart and the sick and disabled person will lose all inclusion in society.
I would even go further and say that there is a big unmet need for support other than financial for people who cannot work. This could include for instance signposting to free online learning sites, IT support for people who are housebound, and so on and so forth.

The view that if a person isn't working then they are absolved of all social responsibilities is a short sighted one and one which is a barrier to sick and disabled people in itself. It is sad to see it coming from the disabled community.
As someone who "lies in bed all day", I still feel strong connections to society. Thanks to technology I am able to keep in touch with many people. I support and advise people online. I have been able to take part in and attempt to shape political debate. I make sure to maintain relationships with many friends and family and even the local community. I continue to try to educate myself. More recently I have been able to take on a very part time role as a volunteer (6 hours a year!).
All of these things include social, educational, family and leisure connections and responsibilities. They are low level time and energy consuming compared to working. They are self imposed and don't create a financial revenue. This doesn't mean they don't exist, aren't important or don't have value.

In her paper Liz Sayce says that sick and disabled campaigners have bought into the government's rhetoric that someone either can or can't work. In reply I would say that many "old school" disabled people have bought into the government's rhetoric that a person is only integrated into society if they are working.

In summary:

  • Don't dismiss my life because I'm living it from my bed.  
  • Recognise the social contributions and responsibilities of those not in work. 
  • Help ensure they can access the financial support they require to continue being included even after giving up work. 
  • Help fight for access for those sick and disabled people who need alternative employment arrangements. 
  • Everyone should be careful not to imply that groups of people be automatically assumed unable to work merely on the basis of their diagnosis or impairment, rather than a particular individual based on their specific circumstances.
  • Finally, everyone should continue the fight for proper support and access, be it in social care, in leisure or in the workplace. As seen by the Access to Work crisis, unity is needed now more than ever.

Thursday, 16 October 2014

I won't take any lectures

I am disabled. I am very ill.
I am also human.
This means that (*gasp*) occasionally I might get things wrong.

I often discuss disability matters online. It turns out that there is a lot I don't know, in particular about other illnesses and other disabilities which I don't personally have.
Being sick and disabled doesn't suddenly make me an expert on every single illness in existence. It doesn't make me aware of every obstacle other disabled people have to face.

When other disabled people tell me that certain disability related ideas, preconceptions or stereotypes I have are wrong and tell me about their own experiences,
I don't tell them that "I don't need lectures from anyone", just because I also happen to be disabled.
I listen.
I learn.

Being disabled isn't a "Get out of Jail Free" card which allows me to discount all other disabled people's opinions and experiences.
At most it should perhaps make me more sympathetic and more willing to listen. Sometimes there are shared experiences which make it easier to relate. That is all.

David Cameron continually uses his own experience of disability to brush off any criticism and shut down any debate of his government's disability or NHS policies.
This is wrong.
His experiences are no more a "Get out of Jail Free" card than my own disability status is.
His policies should be just as open to scrutiny and criticism as those of any other Prime Minister before him. If anything he should be more open to listening, not shutting down debate at every turn. It is time to stop walking on eggshells and address the issues which so desperately need debating.

Tuesday, 30 September 2014

Disabled people exempt? Nope! He did it again!

You might quite understandably be mistaken in thinking that disabled people came out safe and sound from yesterday's Conservative Conference announcement about the benefit freeze. After all our chancellor announced that disabled people and carers would be supported and disability/carer benefits would not be affected

Wait a minute... This sounds eerily familiar.

Let's see. Blog post: 06 December 2012: "The Autumn Statement and Disability Benefits"

You might quite understandably be mistaken in thinking that disabled people came out quite safe and sound from this year's autumn statement. After all our chancellor announced that although restrictions were going to have to be made to most welfare benefits, disabled people and carers would be supported and disability/carer benefits would not be affected.

Yep. Osborne has done it again. And judging by the press, everyone has fallen for it.

You see, disabled people are NOT exempt from the benefit freeze any more than they were from the 1% cap. ESA, the benefit paid to those fairly found too sick and disabled to work after a gruelling series of tests, is to be included.

People in the WRAG (Work Related Activity Group) will have their benefit frozen entirely. Remember that these are sick and disabled people who have been found to be currently unfit for work. This is clearly problematic in itself as they can be seriously ill and/or permanently disabled, as is explained in this blog post from Ekklesia: "Chancellor's hidden blow to disabled people".

But the Support Group will also be affected to a lesser degree, as the policy will work in exactly the same way as for the 1% uprating cap. I will leave out the full explanation here as it is explained in detail in my previous blog from December 2012.
Put simply, only the "Support Group component" part of the benefit will be exempt, rather than the entire ESA benefit. The "main element", which forms the bulk of the payment (roughly 2/3 of it) will be hit and frozen.
This means that sick and disabled people in the Support Group will see their ESA limited to a tiny growth: one third of inflation.

Overall, roughly 2.5 million sick and disabled people will be directly hit by this policy.


It is bad enough that disabled people continue to be targeted for cuts. What is worse is that this fact is actively and deceptively hidden from MPs, voters and the general public.
It was disgraceful that our chancellor was allowed to get away with telling the House of Commons that "Disability Benefits" would be exempt from the 1% uprating cap when it was clearly not the case.
It is doubly disgraceful that he is now repeating exactly the same lie to voters about the benefit freeze.
The government and the Conservative Party should come clean and admit to both MPs and the public that disabled people ARE affected by these policies.



ADDENDUM: Facts and Figures, How the Freeze would affect disabled people this year.

For a single disabled person over the age of 25:
Both WRAG and Support Group have a main element of £72.40 (for single over 25). This will be affected by the benefit freeze.
The WRAG component (affected by freeze) is £28.75. (Total: £101.15)
The Support component (not affected by freeze) is £35.75.

So for the WRAG, £101.15 is frozen.
And for the Support group, £72.40 would be frozen and £35.75 would not, (ie roughly 2/3 of the total benefit of £108.15 is frozen).

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 am 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, or even a desire to "look good" 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.)

Reasoning

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.

EDIT: The bill was not passed. But what is most crucial to my points here are the subsequent remarks made by Lord Falconer. He admitted that the reason for the bill was not the relief of unbearable pain for terminally ill patients, but the indignity of having to rely on other people. In other words the difficulties of being newly disabled.
The fear of relying on other people is hugely exaggerated in non disabled people and is what leads to the comments like "if I were you I'd kill myself". Most disabled people do adapt with the appropriate support. This is what should be concentrated on, just as much and importantly as pain relief, not helping people to die instead.
Lord Falconer's comments are below:
The work that has been done in relation to this shows generally it is not the pain, it is not the fact that you can’t relieve pain – that can be dealt with – it is the sense of people losing their independence and being reliant on other people, and there’s a small number of people who whatever you do would find that an intolerable position to be in.
Dignity in Dying finally admitted on the politics show that they agreed with his remarks, the first time that they stopped hiding behind the pretence that their agenda was purely about the relief of physical end of life suffering.

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.

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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.





EDIT: April 2016

It is 2 years on. Following the death of Connor Sparrowhawk due to neglect while in the care of NHS trust Southern Health and the tireless efforts of his mother Dr Sara Ryan to uncover the truth behind it, terrible facts are now coming out.

An independent review was undertaken at the end of 2015. The Mazaars report found that the trust failed to report and investigate the deaths of hundreds of people with learning difficulties and mental health illness while in its care.

Following this, a CQC inspection was ordered, which Southern Health has spectacularly failed.

Among other things serious concerns were raised about the safety of mental health patients. 
For example, CQC had identified concerns relating to ligature risks in acute inpatient mental health and learning disabilities services in January 2014, October 2014 and August 2015. During the January 2016 CQC found that the Trust had still failed to make sufficient changes to address these risks with many potential ligature anchor points identified at one location.
The trust's chairman has resigned and the board and chief executive are now being called upon to stand down.

I'm not entirely sure how I feel about all this.  I feel I owe a debt of gratitude to Dr Sara Ryan for taking on the trust. I have followed her fight and it has truly been a David vs. Goliath battle. I know she was doing it for her son, but at the end of the day, she has also found justice for people like my friend too. Judging by the reports, perhaps hundreds of people.
More importantly, perhaps this will save future lives, and THAT is what is important.

Monday, 21 April 2014

#BADD2014: Academic Battles

NOTE: Since this was posted so close to May 1st, I am also submitting this post to #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. My "official" BADD2014 post can be found here.
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Chatting and posting on PhDisabled has really made me think back to my PhD days. Many sick and disabled PhD students are struggling with many issues directly related to disability and illness which have a great impact on their research.

It was only when I started to share some of my own stories that I realised just how many battles I had had to fight. While my chronic illness was pretty well supported, as a visibly disabled student using an electric wheelchair there were huge needless issues ranging from access and "health and safety" to outright stereotyping.

In my last post I addressed how I worked through my PhD with a chronic illness. In this post I go through some of the many unnecessary battles thrown up during my time as a PhD student and beyond, showing that disablism is sadly alive and kicking.

 

Visible Problems!


Strangely, being visibly disabled was, for me, less well dealt with than my illness. This is despite the fact that you would have thought being a wheelchair user at the start of the twenty first century was no longer a big issue. The Equality Act 2010 was still a few years away, but the DDA had already been in place for many years.

Yet for instance I was at various stages banned from my own building, banned from the library (I was a "fire hazard"), banned from my office a second time for a whole 3 months while health and safety argued over whether I could bring in my portable oxygen.

Even when I eventually won the right to enter my own office I was placed under strict time restrictions due to my personal evacuation plan which involved 2 members of staff getting me out via the fire-proof lift. I could only be in the building if both members of staff were present.
Ironically, this evacuation plan would not be used in the event of a real fire as it would be "too dangerous" for said members of staff. I would instead be left on my own in the presumably burning building until the fire crew arrived. Kafkaesque? Yes. But true.

I was the only person in the whole department who, if renting a car, had to arrange my own private transport to conferences etc, paid out of my own private money and then claim it back months later. This was due to the fact that the university did not have a contract with a company which owned wheelchair accessible vehicles.

No one told course or talks organisers that a wheelchair user would be present. It was left to me to find out what courses I'd be doing, who was responsible for them, and to let them know about my access requirements. (This appears to be common and an unnecessary addition to a disabled PhD student's workload.) Unfortunately this was often repeatedly forgotten and talks had to be moved at the last minute.
This was not much appreciated and I, rather than the organiser, was blamed, as shown by emails sent to all staff saying
"Sorry for the inconvenience, we've had to change the room for the wheelchair user AGAIN!". 
Imagine how I then felt as we traipsed across to the other side of the campus in the pouring rain.

I was often the butt of annoyed "jokes" about this. The whole situation was unnecessary. I raised the issue of the emails, pointing out that information about the room change could be given without raising the question of wheelchair access, but was told that I was being "too sensitive".

During my time in the department a project was started with the installation of great new technology whereby several lecture theatres at different universities could be linked up via an IT network. A talk, seminar or lecture could be given remotely and followed at several universities at once, a bit like skype on a grand scale.
There was dispute as to which room this system should be installed in. To my horror I found out that a non wheelchair accessible lecture theatre was a strong candidate. 
I was appalled, particularly as due to deteriorating illness, travel was becoming more difficult and I intended to make use of the technology. I also felt that disabled academics are particularly likely to need this and in any case it would also be wrong to exclude us from any lectures given via this medium. This went not only for me but for any future students and members of staff as well.
This was eventually taken on board after I talked to several people, and the chosen room was wheelchair accessible. However this created some bad feeling due to the fact that it was smaller than its inaccessible counterpart and I received some nasty comments as a result.

Due to the age of the building a standard sized electric wheelchair couldn't get around, and so I used a smaller electric wheelchair when getting around during my office hours. I became the victim of bullying on the part of one particular person who took exception to the fact that my outdoor electric wheelchair needed to be stored in their larger open plan office. This person verbally abused me and even somehow physically removed my wheelchair and left it in the corridor.
Rather than address the issue I was told that person was leaving soon (in a couple of months) and perhaps I could work from home until they did. In the end I made arrangements with another colleague and left my wheelchair in their office. However this was both unacceptable behaviour and resolution of the problem.

Finally, I often encountered what I would term "casual disablism" in that people assumed that I was not a PhD student or a researcher simply because I was a wheelchair user.
It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.
While I was still establishing myself as a researcher and people didn't yet know me, I also had the following conversation at a conference
Hello, are you lost?
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?
This was by no means the only example and is rather worrying when you consider what it reveals about fellow academics' attitudes.  This was semi-confirmed when I phoned up to confirm wheelchair access for my first important academic job interview and I was asked if "I was sure I was up to the job".

When I did finally graduate one final hurdle was set in my path. The university had 2 graduation halls. One was wheelchair accessible and the other not.
The university refused to guarantee that my ceremony would be held in the wheelchair accessible hall. I was told I would have to wait for the timetable (issued 2 weeks beforehand) to find out.
No one in my department was willing to help. No one seemed to think this was a problem and everyone just thought it was acceptable to "wait and see".  Yet while my fellow PhD students were eagerly making plans for the day, I was nervously waiting to find out if I could attend my own ceremony. I had to make reservations and rent out gowns etc without knowing whether I would be able to use any of it. As it turns out, I was lucky.
I made an official complaint about the process, pointing out that having an accessible awards hall does not make the graduation accessible if you are not guaranteed to have access to it! I do not know whether changes have been made. This is a typical example of how something can look accessible on paper but not in practise.

Later on, after my PhD, when I obtained a research fellowship I discovered that there were fundamental flaws in the application process for any future grants I might need which were discriminatory. I won't go into them here but it creates a strongly uneven playing field for disabled people who get past the early stages of an academic career.


Still worth it


Yet despite all these setbacks and fights, no one should lose sight of the fact that studying and working in academia can be hugely rewarding and for me was worth every single battle.

That said, I think academia needs to wake up to the fact that it still has a long way to go before it is fully inclusive and not rely on the fact that it is "better than 20 years ago". This may be so, but there are large improvements to be made, and with the recent cuts to DSA things look set to get worse rather than better.

My PhD with Chronic Illness

Chatting and posting on PhDisabled has really made me think back to my days as a PhD student.  Many current sick and disabled PhD students are struggling with issues directly related to disability and illness which have a great impact on their research.

I completed my PhD with both a very visible "disability" and a long term chronic illness.
The disability didn't really impact on my work but, surprisingly was horrifyingly badly accommodated by the university (I have written another entire blog post on the subject!).
My illness on the other hand had a very big impact on how I worked, but luckily I was very well supported by the university.


Adapting to Chronic Illness


The single most important thing was that I had a very good relationship with my supervisor and I made sure that he had a good understanding of my illness. This did mean revealing diagnoses etc. Not everyone would be comfortable doing this, but this was a choice I made and it worked well for me and the supervisor I had.

We had gone over in detail what I could and couldn't do.  He knew in advance that I would NOT be doing a normal working week and that there would be periods of time when I wouldn't do any research.

One thing I soon found is that there is no such thing as "normal" if you are sick.  I needed to forget about what everyone else was doing and concentrate on what worked for me.  It really didn't matter if I did things completely differently to everyone else. Different is never bad per se as long as I get where I need to.  Luckily I had the full support of my supervisor in this regard.

Split Office + Home Working:


My PhD was in Mathematics, so I needed no special equipment and technically could work anywhere. As one of my "disability accommodations", the university allowed me to work from home as much as I liked, even paying for a home printer, laptop and broadband.

When I was "well" or "as good as it gets", I still couldn't work all day. I always felt at my worse in the afternoon and it soon became clear that working at that time was simply inefficient.  Since I was definitely going to have to have time off and there is no official scope for that in a PhD (there is no equivalent to sick leave), I needed to make every single hour count. So I always worked when I felt at my best, regardless of what time it was. Conversely I didn't make myself work when I felt absolutely awful. The quality of the work was generally poor and I just made myself feel sick for longer.

So I started only going into work in the morning and coming home and resting or even sleeping in the afternoons. I would then maybe do a few hours late evening (eg 10pm-1am).
On the other hand I was often up at 3am in pain or with other symptoms. I soon found that that time could be put to surprisingly good use.  I took to jotting down ideas and/or reading "easy" research papers.
As time went on and my illness deteriorated I would alternate days I went to the office. For instance I might go in Mon, Wed, Fri and work fully from home Tues, Thurs.

I asked that most PhD seminars and teaching get timetabled in morning slots. This was mostly done and was of great help to me throughout my time as a PhD student. The location of said seminars was not always so well looked after, but I was very impressed with the way the university accommodated this particular requirement.

Conferences or talks at other universities were extremely difficult for me and I had to rest for long periods after. I worked from home for days after any such event. I went to less conferences and events than my fellow PhD students and as such these were carefully selected to maximise their use and impact.

Housebound: (12 months on and off)


Other times I was housebound but still well enough to do actual research (ie working on my own new original ideas). During those times I plugged away and kept in touch with my supervisor by email and skype.
Roughly 12 months of my PhD were spent this way on and off. These housebound patches were unpredictable. I might be housebound for a week here, a couple of months there and so on and so forth.

The biggest problem here was probably not academic but emotional, mental and social. The lack of contact at the office is obviously very isolating. Throughout my PhD I would always try to go into the office when I could, not really because I needed to for work, but because it was good for me mentally.
Luckily I pretty much lived on campus and was able to get a social life going by inviting people to my flat. This became a regular event with people coming round for lunch and evenings several times a week. This really helped prevent me becoming lonely and disconnected from university life.

Hospital and/or Horribly Sick! (8 months on and off)


There were also times when I was either in hospital or housebound but so ill that original research  just wasn't possible. Those periods were spent doing "background reading". Some of it was even undergraduate or Masters level. If nothing else it kept my brain ticking over. Roughly 4 months of my PhD was spent this way.
This might not have been so bad had it been under my control. The thing is that it happened at unpredictable times: a few weeks there, a month here, a few days there and this was extremely disruptive.

At least 4 months were spent in hospital/recovering and so ill that even background reading was impossible.
I was "lucky" enough to get a very good result (proof of a new mathematical theorem) quite early on in my PhD which meant that my success was pretty much assured from 20 months in. Therefore because things were going so well, my supervisor was happy to let me just rest until I felt well enough to start working again.
Thus I was not required to take a leave of absence, avoiding the bureaucratic and financial difficulties that many sick and disabled PhD students face at precisely the time that they are at their lowest.
I am of course very aware that I was extremely fortunate in that regard and that not everyone would be able to do this.

Success thanks to flexibility but at a cost


Working this way I was able to complete my PhD on time. I think the thing that got me through was easily being able to switch between my 3 different working modes: very sick (home background reading/hospital/recovery), sick (housebound but doing research and in contact via email/skype), "as good as it gets" (research by morning office hours+ home working, + occasional conference/talks).

However I recognise that spending an enforced 8 months doing background reading or even nothing at all, yet still finishing on time will not be possible for everyone. The subject I was doing helped a lot (no lab work + an early "result") and I think this was the deciding factor. I think I would have struggled far more in other subjects, however good I was at them and would have needed time off, with all the financial and administrative issues that entails.

Ideally there would be provision in the system for someone like me who is ill: ability to go part time, extra funding, etc. I would certainly have welcomed it and felt under less pressure. But there isn't. At most you can defer, but are left without funding or support.

Despite the fact that my PhD couldn't have been going any better, I continually felt very much that I was in a "sink or swim" position, and under tremendous pressure to "be well". Ironically this was likely to be counterproductive and make the illness worse. In the later stages of my PhD I had to keep reminding myself that things were going very well and I did have some leeway if I got sicker.

Additionally I was always playing "catch up".  I would be on target and then have a period of bad health and feel that I was behind again. My trick in the end was to try always to be slightly ahead if possible, (as long as I didn't make myself sick in doing so).

This came at a big cost. Although I did have time for a few social evenings as long as they took place at my own flat, most of the time every "useful" waking hour was spent working. The rest of the time I was resting or simply really sick. So although I was successful in the end, it was at great expense, sacrificing nearly all of my leisure time. I imagine this is something a lot of my fellow chronically ill PhD students can identify with.
I think these mental, emotional and physical burdens for sick PhD students cannot be emphasised enough. It is a huge addition to an already difficult task.

After my PhD, when I got my funding for my first research fellowship I did, in fact, go 75% part time. This finally took some of the pressure off at the times when I was very ill and unable to work at all. I also had some time to enjoy a more balanced lifestyle. Emotionally and mentally things became much easier.

If more people with chronic illnesses are to succeed then more part time work and study and the ability to flexibly slip between them should become available. This IS possible and the best example I know of is the one offered in the Dorothy Hodgkin Fellowships. I would love to see more research councils and universities offer similar schemes in the future.

Monday, 14 April 2014

Vital Disabled Student Support to be Cut. Save DSA!


Spread the word. Tell your MP. Write blogs. Let people know what is happening. We must try to stop this.
Share and Retweet this #ProtectDSA.

For further information please see this blog for a summary of the changes and a follow up post with suggestions on what to do about it.
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After becoming disabled as a teenager, I went to university, obtained a first class degree, then completed a PhD.  While I worked extremely hard, none of this would have been possible without the support of Disabled Student Allowance (DSA), which covers the extra costs for equipment and assistance disabled students may require in order to study at university.

This is why I was aghast to learn that the government has just announced plans to cut DSA.
Couched under the language of "modernisation", "targeting funds at those who need it most", "fairness", is hidden the reality of an estimated 60 to 70% cut in funding.
At a time when Higher Education funding is at its lowest, the cost is being shunted onto universities, ill equipped and unprepared to deal with this.  This is a bit like suddenly asking employers to take over the funding and admin for Access to Work.

The government plans to make several key changes of which I will highlight just three:

1) DSA will no longer pay for "basic" computers and peripherals (even though required due to disability). This is justified by saying that "96% of students already own a laptop or netbook".
Bizarrely this assumption is based entirely on a marketing survey conducted by the NUS for the company Endsleigh in 2013. This was conducted by email and only reached 1704 students, just 1% of the UK student population. The proportion of disabled students who responded is not stated.
Given the repercussions of this decision one would have hoped that the government would undertake a full and proper analysis of the computer equipment privately available to disabled students entering university.

When I was doing my undergraduate degree, I was often too ill to leave my room. I was therefore unable to take advantage of the numerous public computers available onsite, often a mere 200 yards away.  A private computer was indispensable, due to my illness and disability and I would not have completed my degree without it.
DSA funded a private PC for me. BUT, it wasn't anything fancy and so under these proposals would no longer be granted.

I am certainly not unique.  The National Association of Disability Practitioners submitted a report to the BIS call for evidence in summer 2013 which explained in detail why disabled students may not be able to use the IT facilities provided on campus and justifying the provision of such equipment to disabled individuals where needed.

I very much doubt every single new disabled student arriving at university in 2015 will own a computer. What will happen to those disabled students similar to me? Will they fail where I did not simply due to a change in funding policy?

2) The government will only fund the most specialist support workers.
When digging a bit deeper this turns out to be bands 3 and 4 of the non medical help services.
This means that the following help will NOT be funded:

  • practical Support assistant
  • library Support assistant
  • reader
  • Scribe
  • Workshop/laboratory assistant
  • Sighted Guide
  • proof reader
  • Study assistant 
  • examination Support Workers
  • Manual Notetakers 
The government says it is encouraging disabled students to be more "independent learners". I feel they are completely missing the point of non medical helpers. They do not do the learning for the student. As much as is possible they enable the student to do the learning independently on the same level as any other student. 
While teaching staff should strive to make their teaching materials accessible, this does not remove the need for these support workers.
Likewise technology cannot always fully remove the need for all of these support staff. Try getting voice recognition software for advanced mathematics. Heck, we even use a special specific word processing program!

3) Students with Specific Learning Difficulties (SpLD) (eg dyslexia & dyspraxia) look set to be hit hard as they will only receive support "where their support needs are considered to be more complex". This by definition means that those with slightly less complex needs will lose all support altogether. This will have a hugely detrimental effect. 

One final comment: DSA was the first time I ever underwent an assessment of my disability needs. This was when I discovered that there were ways round some of the difficulties I was encountering. 
For instance I was having huge trouble using a normal mouse. I was given a trackball. Something so simple, yet it revolutionised my academic work and relieved a great deal of frustration!
The DSA assessment process in itself is hugely important and can help disabled students discover what would be useful to them during their time at university, be it physical aids, computer aids, software, support workers or proper supportive seating. It is a mistake to assume that disabled students simply know this. It is vital that this continue.
___________________

DSA is a hugely successful scheme. It has been praised by the National Audit office for recruiting and retaining disabled students. It is also effective. The Equality Challenge Unit (2013) statistical report shows a higher proportion of DSAs claimants attained a First/2:1 than those who did not receive DSAs.
These cuts seem set to undo all this and steal away the opportunities we enjoyed from all future disabled students.
The National  Association for Disabled Practitioners is calling to protect the support and the NUS has condemned the decision.

For further information please see this blog for a summary of the changes and a follow up post with suggestions on what to do about it.

Spread the word. Tell your MP. Write blogs. Let people know what is happening. We must try to stop this.

You can write to your MP online here.
Please also sign the e-petition here.
Share and Retweet this and use #ProtectDSA






Wednesday, 9 April 2014

Beyond Barriers: DLA and powerchairs

This post is written as part of the #BeyondBarriers campaign, launched as part of the release of the Spartacus Report "Beyond Barriers".
This research into ESA, WCAs, the Work Programme and employment for sick and disabled people proposes an alternative system under the vital principle of "Work for those who can, Support for those who can't".
This post is an example of how proper support can change your life for the better. In my case, DLA.
Stories from other disabled people can be found here.

_______________________


The letter from NHS Wheelchair Services lay on the table. It was short and to the point and completely and utterly devastating. “As you can stand on your own and walk more than two steps we cannot provide you with a powered wheelchair at this time”.
I looked at my trusty manual wheelchair. As my muscle condition had progressed it had become more and more useless. Now, unless someone else was there to push it, it was nothing more than an oversized paperweight.

I looked out the window at the world denied to me. I was in the middle of my PhD. It was going well. I loved it. I had made wonderful friends among my fellow students and office mates. Lately though I had stopped going. I couldn’t leave the house. My legs couldn’t take me further than half way up the garden path and unless someone was willing to push me not only to work but around the office, even just to get to the loo, I was imprisoned at home.  As for such things as posting a letter, picking up something from the local shop or socialising, these were becoming a thing of the past.

How could this be? How could someone unable to leave the house without an electric wheelchair not qualify for one under the NHS? How could someone become housebound, not through illness or their condition, but because they aren’t given the equipment they require? Was I supposed to give up my PhD? Give up on my dreams of a job?

Well, I was lucky. This all happened just over 10 years ago and I had been entitled to High Rate Mobility DLA (Disability Living Allowance) for a number of years. My muscle condition was progressive and I knew it was only a matter of time before I would require an electric wheelchair. I was wary of wheelchair services and so diligently started putting some of my mobility money aside. It wasn’t too long after that NHS letter that I finally managed to save just enough to buy an electric wheelchair thanks to the vital additional help of some disability related funds from my university.

I did so and it literally changed my life overnight.  Rain or shine I used to go outside for the pure pleasure of being outdoors on my own!  I carried on socialising, becoming a regular at the local pub and member of our PhD quiz team once more! I was independent, not requiring carers or friends to go out and do things for me.  Best of all, I continued and obtained my PhD and went on to get a job in that field.  It is not too much to say that DLA changed my life.

Which is why I am worried today for all the disabled people in similar situations to me. Under the replacement benefit for DLA, PIP, I would not have qualified for higher rate until much later on. I would not have been able to save up to buy my wheelchair. I would have remained housebound. No life, no PhD, no job.

Sunday, 30 March 2014

PhDisabled: Making Life Easier

A guest post for PhDisabled.

Doing a PhD while sick or disabled isn't easy, I know. Here I share just a couple of the things I did which made my life easier.

Official help

As soon as possible contact your university's Disability Office. Depending on how good they are they may be able to do some of the legwork for you.
They may be able to help you with some of the official things like claiming Disabled Student Allowance which can get you equipment or support for the duration of your PhD. This can take a while to come through so needs to get sorted at the earliest opportunity.


Who to tell?

This is a bit of a dilemma for those of us who have "invisible disabilities". In my case it was a bit weird because I had both highly visible (wheelchair) and invisible disabilities (chronic pain, fatigue, epilepsy and many other issues). This meant people were sometimes confused as to why I couldn't do something: "but there's a ramp"!

Your supervisor

My personal opinion is that you need to be completely open with your supervisor. They need to know what you can and what you can't do, your strengths and your weaknesses. This way you can play to your strengths throughout your PhD.
This may mean a weird timetable (I didn't work afternoons for instance), slacking off during an off period and working harder during a good one, being happy to do meeting through skype, varying what type of work you do at what times (eg I did a heck of a lot of background reading when very sick and back to hard research when better) etc...

Your way of working may be different to everyone else's. Mine definitely was. It doesn't mean it won't work and you won't get there. But you definitely won't if your supervisor doesn't know about it, isn't supporting you in it and is expecting you to work exactly like everyone else.


Everyone else


Seminar/course organisers

The other people you might want to tell are talk and seminar organisers.
Personally if my attendence is going to be unavoidably erratic, then I would rather they know that I am sick/disabled than they think I am lazy. In any case you may have access issues which they may need to know about. Depending on your disability/illness these may be a bit more complex than simply "a wheelchair ramp".
If your supervisor is good he or she may do this for you if you wish. It all depends on whether you trust someone else to adequately get across the reasons for poor attendence or strange access needs. It is a case of swings and roundabouts. It might be better coming from a fellow academic, but they might not get it quite right!
If you do have access requirements then you will almost certainly need to contact them and I suggest having a standard letter for this.

Fellow PhD students

This is a very personal decision. I did end up telling a few people, if only to quash the idea that I was slacking as I always went home in the afternoons. I started dropping in the fact that I worked in the evenings and even, quite often, in the middle of the night. Maybe I shouldn't have cared, but the jokes started to annoy me.


Talks and Conferences


It is up to us


The thing to remember is that not all staff are adequately trained when it comes to disability issues. The same goes for conference and talk organisers etc. The fact is some won't give disability a second thought.

Unfortunately this means it is up to us to make sure that things will run smoothly. This will soon become an unwanted and unsustainable added workload and stress unless we are adequately prepared. As soon as possible try to identify what your requirements are.

In an ideal world we would tell our faculty office what these were just once and then they would sort things out for the rest of our PhD, informing the critical people who needed to know. In my experience this doesn't happen. If this is also your experience then I suggest preparing two letters with your access needs.

One is for your requirements around your department for talks and seminars. You can send this by email at the start of each semester to the organiser of every postgraduate course you take and every seminar series talks organiser. These are the people who usually have to sort out timetabling and rooms and so they need to know if things like special times or accessible rooms are required.
As I mentioned previously, if you prefer and if you have a good supervisor, you might ask them to do this for you. This will definitely not be an option for everyone though.

The other letter is to send to conference organisers at other institutions and I give much more detail further on.

Talks: 


What do I need? 

This may  include purely physical access (can I get into the room?) as well as timing (am I well enough to attend at all times of day?), seating (can I sit where I need to?), home working (can skype or similar be set up if I am too ill to attend in person?)

My own experience

During my own PhD I requested two things: wheelchair accessible rooms and, for PhD seminars and talks, morning timetabling whenever possible due to my illness.
The morning timetabling was not always possible depending on the timetable of the lecturer giving the course, but a great effort was made to accommodate me and the majority of courses were given morning slots.
Later, as I became sicker, we set up skype and I watched some seminars or participated in some meetings from home.

Conferences:

Please remember that conferences are organised by "ordinary" lecturers or PhD students on top of their usual workload. They may not have had any previous experience with disabled students or staff. Simply sending an email stating something like "I'm a wheelchair user" is really not enough.

Standard letter

I wrote a standard letter for use at conferences which I would sent to the organisers very early on.
This stated that I was looking forward to the conference and needed to discuss certain access requirements due to my disability (whether you wish to disclose the precise nature of your illness/disability is up to you. I usually didn't.)
After this ask after the things as needed. The following list is not in any way supposed to be exhaustive, try to think about what you personally require and adapt accordingly.

Access

If you require wheelchair accessible rooms, remember to state what that means. I know that sounds silly but I have had the experience of having level access but doors too narrow for a standard wheelchair to get through! So remember to state level access with doors 80cm wide.
If you are giving a talk remind them that you need to be able to get to the front of the room (many have a small platform you will not be able to get up on).
Many universities do not take this into consideration when stating that a lecture theatre is "wheelchair accessible". It seems they do not expect the lecturer to be a wheelchair user! Warn the organisers of this (it will avoid last minute chaos, which is really not fun).
Similarly if you have sensory requirements, explain what that means.


Parking

Even if parking is usually not allowed close to the buildings, most organisers will waive this if you are disabled. If you have access to a car don't hesitate to ask if you can use it around campus and use the disabled bays, particularly if it is a large campus and the talks are spread out. If you don't have a blue badge sometimes they can issue a university badge for you for the duration of the conference. Don't hesitate to ask if this is possible.


Timetabling 

Again, if you have an illness which means timetabling is an issue, let them know at this stage. Sometimes if you contact them early enough in advance they will make sure that the talks you want to attend are at the times you need them to be.


Accommodation 

Check where the accommodation will be. If you need to rest often, ask to be placed in the accommodation closest to where the talks will be held. Sometimes they are even helpful enough to open up a hall they weren't planning to use.

This way during my own PhD I was nearly always able to get accommodation close enough to the talks that I could go and lie down when I needed to.

If you receive care and have a PA accompanying you ask for an extra room at this stage. You can also ask whether this room can be funded by the conference. Usually conferences will allow your PA to get into the conference for free. Many will also waive the accommodation fee. But you have to ask.


Disability Website

Finally, I would look up the website of the university and find the page of their disability services. I would include this in the email and suggest the organisers contact them if they wanted advice.
I would then ask the organisers to get back to me with any questions.

This may seem a bit daunting, but once the letter is written you can use it throughout your PhD for every single conference. You don't have to keep thinking about what you need. A conference comes up, you simply send your email and then answer any further queries the organisers might have. If there are problems you will also know about them well in advance and be prepared.

Obviously I would recommend making these requests in as polite and friendly manner as possible. Don't expect all your requests to be accepted every time, depending on what they are. For instance timetabling can't always be changed as we would like, depending on guest speakers. Things like accommodation and access needs on the other hand should always be sorted out.
I found most organisers to be extremely friendly and looking to find a way round things. Some or most of my requests were nearly always met and that meant I was able to attend conferences which would otherwise have been completely inaccessible.


Good Luck!


There are probably things I've forgotten but this is already getting far too long. I hope some of this will be of some help to those of you currently doing or starting PhDs. To all of you, good luck.