We get a free car

• No! However, if the disabled person qualifies for Disability Living Allowance at the highest rate for Mobility (i.e. can barely walk or not walk at all), then they may opt to give up this money in return for use of a car via the Motability scheme. It’s essentially using their DLA mobility assistance for a hire-purchase car rental. Even then, any but the most basic models of car will require a deposit which the disabled person is required to pay, and you have to go through this process every three years.
• Not everyone who is disabled with mobility problems will qualify for the higher rate of mobility DLA, so they do not have the option to get a Motability car.
• Those who do get DLA may need it for other things – for example I spend mine on minicabs to get around. The higher rate is £54 a week (in 2012) and this doesn’t go far enough if you have other transport and mobility needs to pay for, so not everyone will want to give this money up in return for a Motability car.

Truth: There is no such thing as a ‘free car’. If a disabled person gets DLA at the higher rate for mobility then they can opt to give it all up to pay for a Motability car, but they may have to fund a deposit out of their own pocket to get the car that they need. If they give up the mobility component of their DLA then of course they don’t have it available for other needs.

We all have a carer (aka “Hello love, who’s with you?”)

• No! Many disabled people live entirely independently, on their own.
• Other disabled people live independent lives with the help of Personal Assistants (PAs). Note the term PA – the difference is that while a carer may take on a very medicalised, nursing role, a PA will do whatever the disabled person independently asks them to help with.
• We don’t all qualify for care or assistance. For example because I can wash myself (albeit with aids) I don’t qualify for any help from social services, even for other tasks that I need help with such as preparing food or cleaning safely.

Truth: Some disabled people employ Personal Assistants to enable them to have an independent life; some have carers (in the medical sense) to tend to them; some have long-suffering spouses who muck in as necessary despite being unpaid; and some do not have, or don’t need, anyone to help them!

We get a wheelchair if we need one

• Not necessarily. And those that we do get provided can be too basic – heavy and hard to manoeuvre or lift into the car – for our needs. To learn more, please read my previous article ”Your legs came for free – why don’t my wheels?”. My own chair cost over £2000 but the NHS only contributed £700 towards it, the cost of the more basic model that they would fund. This despite Wheelchair Services agreeing that the £2000 wheelchair was what I really needed. I had to pay the rest.
• There are charities such as Whizz Kids who try to plug the gap and provide the chair which is actually required. The existence of these charities proves that people do not always get what they need through the NHS.
• Even when a wheelchair is provided through the NHS it can take time. My first chair took 8 months from first appointment through to delivery.

Truth: People who need them will usually be offered a wheelchair but it might not be one they can lift, or propel safely. Many people revert to buying their own, with their own money or if they are in England they may get a partial contribution from the NHS (known as the ‘voucher scheme’). The difference in cost can be many hundreds of pounds, or in the case of powered wheelchairs, thousands.

All of the above points can be summarised as a belief that “we get the help we need” and as you can see, no we don’t! We don’t all get care, there is no such thing as a ‘free car’, and often the NHS can only provide a basic model of wheelchair.

Things are set to get even worse for disabled people when the Welfare Reform Bill takes away more of our funding, removing DLA and reducing the entitlements for those who cannot work. But that’s a whole other story!

Now to a few points about people’s conditions.

We all want to “get better”

• To understand what’s wrong with this statement, you need to understand the difference between the medical model of disability (which says “What’s wrong with you and how can we make you normal?”) and the social model of disability (which says “What access barriers do you have and how can we remove them?”). (For more information see this page on the BFI website.) However, what you need to know is that the social model is preferred nowadays, and so disabled people’s differences do not mean that they are somehow “broken” and need to “get better”. We just need any barriers to our access to be removed, so we can be equal!
• Many Deaf people see their deafness as part of their culture, and those people use the term “Deaf” with a capital D. There is a whole Deaf community, and they have their own pub nights, discos, churches etc. Deaf people do not necessarily see it as a part of themselves which should be changed if it can be. This means that cochlear implants can be very contentious among d/Deaf communities.
• Some people who were born with their impairment – for example someone with Cerebral Palsy – will just see themself as “me”. It’s the way they’ve always been, and if the impairment was removed they wouldn’t be “them” any more. This also applies to some people with mental health conditions which influence their personality. So not everyone would want to be “fixed” even if it was possible.
• Other people will see their impairment as being static, so no matter how much effort they put in, it would not improve. For those people there is no point in hoping for a cure.

Truth: Not everyone with an impairment wants it to be removed or “fixed”, even if that was possible (which of course is not always the case). Of course it is a matter for personal choice – some disabled people are forever searching for solutions to improve their condition, but others are not. This area can be a minefield for the non-disabled person to negotiate but if in doubt, defer to the opinion of the disabled person that you are dealing with. This also shows why it is not correct to ask “what’s wrong with you?” – the answer might be “Nothing, I’m fine!”

We are contagious

• Most of the causes of impairment cannot be caught. Of course there are some cases where the cause of impairment is a virus e.g. HIV. Even then, you can’t catch it from talking to us or normal discourse.
• There will be other examples where the original cause of impairment was a virus such as measles, or perhaps a virus has triggered a chronic fatigue condition, but this was in the past and the person is no longer contagious.

Truth: Generally not! It is very rare that the disabled person has a contagious condition. Don’t let the fear of contagion put you off talking to or spending time with a disabled person. However if you have good reason to be suspicious, and a real need to know – for example if you work as an assistant to the disabled person – then just ask the person concerned if they are currently contagious or if there is any contact that you should avoid. Other than that, carry on as normal.

It’s ok to ask “What’s wrong with you?”

• No, it’s very rude! It is none of your business why someone is disabled. Just because they may seem different or use an aid does not make them public property!
• As above, not everyone believes there is something ‘wrong’ with them

Truth: You should avoid this kind of question as it can be offensive. If you need to ask the disabled person about their impairment, e.g. so you can provide a service to them, then you should ask them about any access needs they have (and focus on how to address these needs, not what the ‘cause’ may be). Read about the Social Model of Disability and then focus on how you can remove any barriers to their access.

If  you can walk, you can’t be disabled

• Not true – there are many “invisible disabilities”. For example there are conditions which cause pain, or would limit the ability to walk far, which you cannot detect from looking at someone – lung or heart conditions for example, or joint pain. Worse, people with invisible disabilities often live in fear of being judged or even reported by neighbours who don’t understand their condition.
• Plus of course, not all impairments are physical! People can be disabled by mental health conditions such as bipolar disorder or agoraphobia.
• There are also variable conditions. Someone may be able to do an activity one day, but not the next. Indeed, sometimes undertaking an activity (like going for a walk) might mean that they then have to take time to rest and could not manage to walk for a few hours or even days. You don’t see the rest time as it takes place behind closed doors.

Truth: If the person self-identifies as disabled, then they probably are! You certainly cannot tell from looking at someone whether they are in pain, or will have to rest when they get home. To be honest, it’s probably none of your business.

That’s cleared that up! Finally a couple of myths on a hot topic…

We don’t go to work

• That’s just not true. I know disabled people who work and if you think about it, maybe you do too. How about the actor Verne Troyer (Austin Powers’s Mini-Me) or the reporter Frank Gardner?
• In fact some disabled people rely on their Disability Living Allowance to enable them to work – perhaps it pays for their transport to get there, or for ready meals when they are too exhausted after a day’s work to make food safely.
• There is also a scheme called Access To Work, run through Job Centre Plus, which exists to remove barriers to disabled people working. For example it can provide specialised seating, or even an assistant if necessary, so that disabled people can work where possible.

Truth:  Disabled people do work, but perhaps not in proportion to their non-disabled counterparts, or perhaps they have invisible disabilities so you don’t know that the person at the desk next to you is actually a disabled person.

We are all on benefits

• No – not everyone qualifies. Whether it is Disability Living Allowance for everyday needs, or Employment Support Allowance for those who can’t work, these benefits are very hard to qualify for, or to prove entitlement. Many disabled people do not qualify for a disability benefit.
• Not everyone who is entitled to a disability benefit will claim for it. There are many reasons for this, from someone who is in the lucky position to feel they do not need the money, through to the fact that the forms are long and daunting and emphasise what you cannot do – some people find this too hard to face. For more information please see my previous article DLA – just a form filling exercise? If only it was that easy!

Truth: Not every disabled person you see will be on benefits, whether that is due to not being entitled or just not choosing to claim. But in any case, bear in mind that disability benefits should be there for anyone who needs them, as they cover the additional costs of living that we have to bear – no matter what our backgrounds. Also, the fraud rate for disability benefits are very low – about 0.5% – do you really begrudge some extra money to people who genuinely need it?

I hope you’ve found this article helpful and will share it with your non-disabled friends and colleagues – whether they voice it or not, I bet they’ve wondered some of the questions above at some point! If you can think of any more myths about disabled people which need exploding, please leave them in the comments section. I’ll be delighted to read them.

Imagine the scene: someone is bringing a guest to dinner. Casually they tell you “oh, by the way, she’s a vegetarian”. Uh-oh, what do you feed them? To give you an idea of what I’m talking about, here is a common scenario:

Host: I’ve spent ages making them something special! It’s taken twice as long to get this meal ready!
Veggie: Oh no, she’s made me something special… polenta… but I HATE polenta… and she’s given me enough for four people!

Don’t panic! Catering for us veggies can be painless – here are a few tips to make it go smoothly.

If you remember just one tip, let it be this:

• If you’re serving meat and veg, just make a cheese sauce for the veggie (it can even be made in advance and microwaved) and let them have the same vegetables as everyone else, with cheese sauce instead of meat. This allows them to be included, it’s tasty and it’s a balanced meal. Plus, it’s less work for you!

Here are some more general tips. I speak from the point of view of someone who’s been veggie from the age of 11 (by choice). Of course I do not speak for all vegetarians, but I hope I can cover most bases. I’d love to hear comments from other veggies particularly if their views differ and they can offer further advice.

• Check what the veggie will not eat – expect that all kinds of meat and seafood are out. Generally, animal products such as lard, suet and gelatine are also out (so check dessert ingredients too). Ask whether free-range eggs, milk and veggie cheese are ok, and avoid others to be on the safe side.
  
  
• Check whether there is anything the veggie really cannot face. Although it is your house, and you should feel free to carry on as normal – in fact the veggie will probably feel bad if you don’t – it can still be offputting if someone leaves the table to be sick. Foods that can be particularly hard for some vegetarians to deal with are: food on the bone (e.g. people gnawing chicken legs), food with faces (e.g. whole shrimps, whole fish), food with a strong smell (e.g. crab pate, smoked salmon) and the sound or sight of meat being carved, or ripped apart (e.g. ribs being cracked from racks). If it is possible to carve in the kitchen rather than at table, it is much appreciated.
  
  
• Cheeses can be veggie, or non-veggie (containing animal rennet). Note that there is no such thing as vegetarian Parmesan – if it’s labelled as Parmesan it is bound to contain animal rennet – however there are vegetarian “Italian style” chesses which you can use instead, such as Bookham’s “Not Just A Pasta Cheese”, and Sainsbury’s Basic range “Italian Hard Cheese”. If an item is not labelled as being suitable for vegetarians, it may be that it contains non-veggie cheese. Pesto is a regular offender for this as it contains Parmesan (some supermarket’s fresh pestos are ok, or you can make your own). Look for the veggie logo when shopping just to be sure all ingredients are compliant.
  
  
• Veggies eat normal food, they just don’t eat meat and fish! If you are serving something you would not normally eat, chances are that they would not normally eat it either! Which leads onto…
  
  
• Don’t make them something “special” of their own! It will take you longer, and you may have no idea of their taste. It is a nightmare to be looking at a pile of inedible spiced lentil mix, especially when you know the cook spent ages on it.
  
  
• …but if you do make something separate for the veggie, only give them enough for one person! Even if your recipe served four, please don’t make them sit behind a mountain of food. However much they eat, they may feel bad at leaving the rest. Serve a single portion and keep the rest in the kitchen – offer it when they clean their plate, if you wish.
  
  
• And if you will make something separate, allow the vegetarian to join in with the meal and have some of the other things on the table too. Don’t stop them from having the vegetables “for everyone else” if they fancy it. You want to include them in the meal, not exclude them – otherwise why invite them?
  
  
• Don’t worry about serving a balanced meal (squeezing vegetable protein, mushrooms or lentils into everything…) just worry about serving something tasty. It is only one meal, the veggie won’t get ill if it isn’t perfectly balanced!
  
  
• Don’t serve imitation meat, such as Linda McCartney pies and sausages, or Quorn, unless you are certain that your guest likes it. Many veggies who don’t eat meat on principle will be reminded of meat and grossed out, and veggies who don’t eat meat because they dislike it won’t like imitation meat any better! In addition, if you’re not used to eating Quorn it can go straight through you – many people (not just veggies) reported this to me, a very unpleasant effect. Instead, how about serving Goodlife Leek & Cheese Sausages (or similar) in place of meat? They resemble croquettes so should be inoffensive.
  
  
• Some other easy ideas, which you might serve for everyone not just the vegetarian: spinach and ricotta cannelloni (available in most supermarkets in the fresh pasta section), ratatouille with potatoes & green vegetables, cauliflower cheese or potato gratin and vegetables.
  
  
• If you are making stuffing, why not cook some of the mix in a separate dish, so the veggie can have some too? (Obviously, this doesn’t apply to sausagemeat stuffing!)
  
  
• If you make veggie gravy, many of the mixes (e.g. Bisto) are quite dull. The best I’ve found is Bisto Best, roast veg flavour. Add a teaspoon of balsamic vinegar and/or mint sauce to sharpen it up a little and make it more interesting. Taste it and see if you’d want it on your own food!
  
  
• It is less of an issue to serve a veggie a separate dessert. All the veggies I know would rather have this than no dessert at all!
  
  
• During the meal, please treat the vegetarian naturally, don’t draw attention to them or make them feel awkward. Be as welcoming as to any other guest, no matter what you think of their beliefs – after all, you have invited them to your home and surely want them to feel comfortable.
  
  
• Don’t ask them about their vegetarianism around the dinner table. They will feel awkward, and if they are descriptive their reply may well put you off your own meal! However, feel free to ask them what they like to eat for future reference.
  
  
• Remember that the veggie is usually apprehensive about eating with people who aren’t used to cooking for them. They probably feel just as awkward as you, and are willing the meal to go well just as much as you!
  
  

So remember, if in doubt simply serve whatever you’re having, minus the meat or fish, plus a veggie gravy or a cheese sauce, or perhaps a cheese ‘sausage’, and you’ll be well away!


A few notes for caterers or restaurateurs:

• Please be inventive and give just as much care to your vegetarian dish(es) as you do to the others. It is so depressing to see mushroom risotto on every restaurant menu, or vegetarian lasagne in every mass-catering situation. Don’t see vegetarian food as a problem to be addressed but as an opportunity to be creative.
  
  
• If possible, offer a choice of dishes. Perhaps some of your other plates could be adapted to be vegetarian on request? Indicate this on the menu.
  
  
• Please avoid making the vegetarian dish also be the gluten free and low calorie option. Not all vegetarians are on a diet. If you want to provide low calorie and gluten free options this is laudable, and so much the better if one of them is also vegetarian, but please offer a “normal”, hearty vegetarian dish too! Don’t cram us into a “one size fits all” option.
  
  
• Indicate which of your desserts are vegetarian on the menu – even if they all are! Many places neglect to do this, and the waiters often have to ask the kitchen. It is better if we can see which dishes we can choose from without having to make an issue of it. (Of course, I am assuming that you are already marking which main, starter and side dishes are vegetarian!)
  
  

I hope these tips have helped anyone who is daunted by the prospect of catering for vegetarian guests. But if in doubt – just ask them what they like!


This post is adapted from my older version written in 2009, which can be found here .

The Spartacus Report is a piece of research, released today, entitled “Responsible Reform”. It looks at responses to a government consultation about replacing Disability Living Allowance. The report was funded and written by disabled people, and we feel it belongs to us.

Disability Living Allowance is an essential payment, made to people with disabling conditions to compensate them for the additional costs of mobility, and/or care. It is paid whether or not the recipient is able to work, and in many cases makes the difference between being able to leave the house – and go to work – or being stuck at home. For more information on how essential DLA is to people, see my previous articles The real difference made by DLA and DLA – the gateway benefit.

In December 2010 the government opened a consultation on replacing DLA with the Personal Independence Payment (PIP). They had already said that 20% of DLA payments had to be cut, although the government’s own figures accepts that less than 1% of claims are fraudulent. So where would these cuts come from?

A response was published by Iain Duncan Smith, secretary of state for work and pensions, in April 2011. This document claimed to outline the responses of the consultation – from over 5000 individuals and 500 organisations – and the government’s reply to it. However, it glossed over the overwhelming opposition to the proposal of PIP.

Something had to be done. Sue Marsh (“suey2y”) and other disability campaigners joined forces. They came up with the “Spartacus report”. The Responsible Reform report gives the truth of the responses, having obtained copies of the organisations’ responses via a Freedom of Information request.

It shows that
• 92% of respondents opposed the proposal to change from 3 different levels of the Care component, to 2 levels
• 87% of respondents opposed the stopping of automatic entitlement to DLA
• 98% opposed changing the qualifying period from having the disabling condition for 3 months, to having it for 6 months before claiming
• 90% opposed the introduction of new face to face assessments
• 92% opposed change to the review system
• 88% said that aids that a person uses should not be considered when assessing them
• 88% opposed a new change-of-circumstance system involving sanctions
• 94% oppose the introduction of compulsory advice and support
• 64% said that one-off costs should be funded by DLA – it is not clear what this question actually involves
• 100% opposed the removal of DLA mobility component for residents of care homes, and the government have since rescinded this
• 99% oppose the removal or streamlining of passporting (i.e. using DLA as a gateway benefit to other services)
• 54% support the sharing of information between departments

In section after section, the conclusion is “The Government fails to respond to the concerns and suggestions of disabled people”.

It is clear that disabled people don’t want DLA to be overhauled or replaced with PIP, not because it isn’t working, but precisely because it is. The government needs to find the money to sustain DLA payments at their current rates, otherwise disabled people will be the ones who pay the price, by being stuck at home unable to afford transport costs, or lost without essential aids, unable to pay for the prepared food they need because they are unable to cook, or unable to fund the care they require. Please do read The real difference made by DLA in order to understand exactly what disabled people stand to lose. It’s more than just independence and dignity.

So what can you do about this? Read the report: Shortened Report – Responsible Reform and Shortened Press Release. If you’re on twitter, show your support using the #SpartacusReport hashtag. Contact your MP saying something like “This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response.” You can contact your MP using the Write to them website.

Even if you are lucky enough not to be disabled yourself or have any disabled relatives, remember that disability can strike anyone. It is just one car crash, or stroke, or fall, away. One in two people will be disabled at some point in their lifetime. You too may find yourself dependent on disability benefits. Can you afford to ignore this report?

2011 has been a tough year for many people as the recession bit, but in Leytonstone there were some signs of hope and a couple of fantastic additions to the area.

First came the reopening of the Red Lion, as a community local which attracted me, my friends and neighbours. Often when I drop in, I’ll run into someone I know, and that for me is part of what a good “local” should be. The pub has some great ales, and holds live music events, so there are plenty of reasons to visit. At last there is somewhere to meet friends and to pause on the way home – just what the area needed.

Second came the new art gallery, The Stone Space. Run by many of the people who organise the annual Leytonstone Art Trail, along with a number of keen volunteers who invigilate during opening hours, The Stone Space is a wonderful venue which has already hosted a number of interesting exhibitions. They change roughly every two weeks. For more information see http://thestonespace.wordpress.com

Next door to The Stone Space is Slate, an art display space in the windows of what used to be Waltham Forest Direct. To mark its new name the display boards have turned dark grey. It’s overseen by artists from The Stone Space, and I’m the co-ordinator. Exhibitions change every 6 weeks, and currently on show is a show of woodblock & linocut printmaking, and jewellery, by Somhairle Kelly. http://www.slate-arts.com/

So it’s not all doom and gloom. We end the year with some new venues which have much to benefit Leytonstone – and hope for 2012.

Wherever you are, I wish you a Happy New Year!

But one or two days a week, there is another version of me. Listless, exhausted and depressed, lying in bed, dizzy if I dare to sit up and weak if I stand. On days like that I fall asleep when I try to focus, and spend much of the time dozing. I am too tired to eat, and it would be dangerous to attempt a shower.

I’ve been that second, soulless, person rather too much lately, as a result of my pain, and the side effects from strong medication. When it happens, it’s impossible to hold onto memories of being capable. It may only be a day since I went to the shops or drove to a doctor’s appointment, but it feels as though I cannot do anything – and never will. I need someone to bring me food and to care for me. I forget how much I can achieve on a good day, because when I’m that ill and exhausted I become depressed. It seems as though my health is going backwards and slipping from my fingers, and that I will never be out of bed or independent again. My life is no longer my own, as I am unable to control it. I end up crying, begging my husband to come home and look after me, and worrying that I am a poor excuse for a wife – meaning that after a hard day’s work my husband still has to walk the dog, do the shopping, and get himself a meal. Little happens in our household unless he does it, and that’s just not fair!

I am writing this to remind myself that good days do still happen. That I have so many achievements recently; singing Handel’s Messiah with my choir, organising an arts display space, running the Pylon Appreciation Society, and even just little things such as getting a few bits from the supermarket. I need to find a way to hold on to these memories on a day when they would be impossible.

On my bad days I moan on social networks such as Twitter, and I am lucky enough to have friends who are hugely supportive, rather than being scared off.

But it’s all very well being introspective. I need to learn new coping techniques. I need to hear how other people get through their worst days. So it’s over to you. How do you manage when you’re having a flare up or relapse, or when everything gets on top of you? How can I stop the feeling that I am losing control of my life?

In the early hours of this morning, this is the appalling story with which the Daily Mail were leading. “Disabled benefit? Just fill in a form”.

They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”

The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.

How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.

Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn’t it? Detailed, isn’t it? Daunting, isn’t it?

As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.

Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on “just” the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment – GP, specialist consultant, main carer and so on – plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as “just a form” but it’s hardly as if I got my DLA based purely on my own testimony.”

The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?

Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!

And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin – he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can’t accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I’ve nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.

If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.

Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.

Well, Daily Mail? What’s so unreasonable about that?

It is hard enough to get a DLA award as it is. Please, don’t say we’ve got it easy.

“Warning over legal aid cuts for disabled people” the article leads. “Ministers are being urged not to restrict legal aid for disabled people wanting to challenge benefit decisions”.

News comes of yet another way that government is looking to save money – this time on a £2bn legal aid bill which it claims is “unaffordable” – money needed by disabled people to get legal assistance when benefit claims go against them.

This action is being questioned by a group of 23 charities including Scope, Mind, Mencap, RNIB and Leonard Cheshire.

A spokeswoman for the Ministry of Justice told the BBC that the review of legal aid meant that it would be “targeted at the most serious cases”.

I would argue that ANY situation where you could potentially lose your benefits is a “most serious case”. Indeed, given the comments on Where’s the Benefit and my own blog (Flash Says) it can at times be life and death.

Comments on my blog include Roger, who wrote “Since this all began [cuts to benefits for disabled people] I have began to feel totally paranoid and at times have given thought to killing myself mainly due to the daily pain I endure but also due to the uncaring way this government is treating us.”

James Gilbert simply said: “If my benefits are cut I don’t know what I would do”

You only have to read one article – Suicide is part of the disability debate – to know how important it is for disabled people to receive benefits. As well as keeping them alive (funding a roof over their heads, food, heat and light) it also validates that person. “Yes, we know you are disabled. We believe you.”

The nature of disability can be such that it makes it hard to complete benefit application forms. People can have memory problems or find it hard to concentrate. They may have physical problems with writing or typing, or they may not be able to construct clear sentences. I know that when I am struggling with pain I find it harder to think, and this affects my ability to write coherently – it is clear to see when I review letters I’ve written, I can easily tell which were done on a “good pain day” and which on a “bad pain day”. But some people don’t get good days, only bad ones – and yet through this they are expected to complete long booklets explaining why they are entitled to benefits.

Disabled people should of course be supported to appeal when a benefit decision goes against them. It’s already been proven that less than 0.5% of Disability Living Allowance applications are fraudulent, for example – these are the government’s own figures. Therefore, when claimants find a decision goes against them, and come forward asking for help to appeal, they are almost certainly going to be genuine, people who really do need help. Likewise with Employment and Support Allowance.

Commenters on Where’s the Benefit and Flash Says have said that the whole application process (including the fear of perhaps having to appeal) is so stressful that they have decided not to apply and to try to live in poverty without the benefit they are entitled to. Surely people should be given legal assistance to appeal, and feel supported by the government, rather than being forced to live in poverty because they feel beaten by the system?

It is critical that legal aid is available for those who need to challenge benefit decisions. A third of disabled people aged 25 to retirement live in a low-income household – and twice as many disabled people live in poverty compared to those who are able bodied. Without legal support when benefit decisions go against them, this shocking figure is surely set to grow.

Paul Reekie and Christelle Pardo have already killed themselves when their benefits were cut. How many will follow?

Providing this legal aid really could be a matter of life or death.

The side effect I really hate, however, is lack of appetite. For a gourmand like me, that’s a terrible thing. I’ve gone from loving my food and eating out being a real treat, to having to force myself to eat when every mouthful is horrid.

A few years ago, I saw a programme about anorexic girls who were forced to eat – they did everything to avoid it, and to try and make their plate look clean – hiding food under the table or even in their hair. At the time that was incomprehensible to me but now, faced with even a teaplate of food, it’s how I feel. Each mouthful feels impossible and I just want the food to disappear, but I know I have to carry on until another bite would actually make me throw up. On a good day I can enjoy the flavour of some of it, but my relationship with food has utterly changed. I don’t even fancy alcohol very much and often make one drink last all evening.

So, that’s oxy for you. Sometimes it makes me feel nauseous as well but I can manage that, it’s unpleasant but bearable and compared to the other two side effects is insignificant.

Now imagine you are in bed at night. You wake up. Damn, the curtains are still dark. You reach for the clock – it’s 3.30am. Although you were in bed early, you know you were still awake with pain at 1.30am so the most you have had is 2 hours sleep. Back at midnight you’d taken the DHC but it doesn’t seem to have done much. Now everything really hurts; your knees have a burning pain. Your hips have a more stinging ache, and your ribs ache on the side where you’ve been lying.

You try turning over – grabbing hold of the headboard to haul yourself up, so you’ll put as little weight as possible on your hips and pelvis. Wincing as you turn, you rotate, and this relieves the ache in your ribs for a few minutes. You gently tuck some duvet between your two burning knees.

Turning over hasn’t helped. Light glints on the blister pack of oxy by the bed. You know it will block you up and also make you struggle to eat. But you’ve only had 2 hours of sleep and are desperate for more. What choice do you have?

In another case, alarm bells started ringing from the off, but I still did the deal. Guy (not his real name) contacted me needing a website for his Private Investigator business. He would check out internet brides, to make sure they didn’t have family elsewhere before marrying someone from the west.

My suspicions were raised when Guy wanted to make a 2 hour round trip to pay me the deposit in cash rather than cheque. However, some customers like to meet me, so I agreed. We discussed his website, and I went away and did the work. We met again so I could receive the balance owed, and this is where it turned weird. Guy confided that he was a wanted man in an Asian country, and needed money from his PI business so he could raise a bribe to stop officials throwing him in jail if he returned. At this point I smiled politely, while thinking “how can I get out of this?”

Several months later Guy asked me to update his website, which I did, but then he vanished without paying. At renewal time his website simply expired. Perhaps he was in prison?

Guy taught me another lesson – don’t be afraid to walk away. That’s exactly what I did when I met another customer, who I’ll call Alex. I’d explained to Alex that I specialised in website accessibility, and would provide him with an elegant but straightforward website with text and static images. This was agreed. We met so that I could show him the demo of his website. The conversation went like this:
Me: [finishing demo] … And that’s your website.
Alex: Where are the dancing animals?
Me: What dancing animals?
Alex: In my head, the website has animals dancing across the screen.

The first three words are the issue here – “in my head”! Having explicitly been told that I didn’t do animation, even making a joke out of the fact that my name is Flash but I don’t create Flash movies, Alex still envisaged that I’d provide some – but never told me about it! We agreed to part ways and he settled up. Later, I saw the next incarnation of Alex’s website – it had pages whizzing in from all sides and tinny music playing – very much “My First Website” – reminiscent of something from the late 1990s. I’m glad we parted company, because I would never have allowed myself to produce anything like that!

What should you do about awkward customers? I think the key here is “be proud of your price” – if they are going to be hugely fussy and need lots of changes to the website, or command a lot of your attention then they will have to pay for the service you provide.

It’s not always like that; I have several long standing customers and I appreciate their loyalty – I hope they enjoy the level of service I give them in return. But if your instinct tells you something’s not right, listen and don’t be afraid to walk away – it could save you a lot of trouble in the long run.

I followed signs, noticing “Best for M&S – Carpark B” so I stayed in the right lanes, managed not to get cross with everyone else changing lane at the last minute, and entered the carpark. Hooray, it was level – no nasty whirly ramps. “I’ll come again!” I thought.

At the barrier a staff member handed me a green plastic chip (about £2 sized) from the machine, which I took along with a leaflet about how the parking operated (you pay on exit, but for a few weeks the first 2 hours are free) and took instruction on where to find the disabled bays – “at the front”.

Lo and behold at the other end of the carpark, on the same level I entered, were several aisles of disabled bays. I dutifully memorised my aisle (213) and followed signs “to the shops”. This led to an escalator down to Waitrose (er, isn’t Waitrose at the opposite end to Marks & Spencer?) where a helpful assistant directed me back through the carpark to a lift by a sign for John Lewis (er, isn’t John Lewis on top of Waitrose?)

I looked back and made a mental note of how to get back to my car from the lift, as well as which floor I was on (Mezzanine). And so down into the shopping centre!

I did indeed come out near Waitrose, but equipped with a map and following signs it was easy to find Marks & Spencer, even though it was at the opposite end. The floor was clean and polished, and I whizzed through in my wheelchair; although there were lots of people there was room to move too. I smiled as someone’s overloaded bag burst in front of me (sorry, but he was laughing too). I even smiled at a child carrying a large Build-A-Bear bag with something pink inside. And I smiled again to see that Lego Store was only full of adults, even though it was well past school kicking out time.

In M&S I had a good experience as a kind assistant not only showed me to the item I wanted, but carried my basket there, and then took it to the tills for me. A second assistant loaded my full shopping bag onto the back of my chair. Now I just had to find my way out.

It can be hard to navigate when your eyes are at other people’s waist heights, but it was a direct route, passing the same shops I’d noticed on the way there (including queues of tweens outside Pulp) and I found my way back to Waitrose. Now to find a lift… hang on, it doesn’t have Mezzanine on it. Just LG, G, 1 and 2. Bother. Now where?

I consulted my map, but it didn’t show lift locations. I tried to retrace my steps, but I could only get a feeling that “I came out near Waitrose, and went past the ad for Foyles, so it’s around here somewhere”. I couldn’t find any manned information points, nor did I remember seeing one.

I spoke to a Westfield branded assistant. He wasn’t sure of the right lift but sent me in the wrong direction anyway, taking me to Carpark A. Not to worry, there were lots of assistants in the carparks and one was certain she knew the way to the Mezzanine in Carpark B… To cut a long story short, she didn’t. However I can now tell you what Carpark C looks like, as well as the rest of the mall! There was a specific moment when she stopped marching ahead and started looking lost, when we realised we were stuck with each other until I found the Mezzanine. I offered her my map and made desparate jokes about wanting to get back to the car before free parking expired. She asked if I could take a travelator but I didn’t want to try this as apparently it’s rather angled, and my chair was already quite “tippy” because of my shopping on the back – and I didn’t trust my guide any more!

We were just about to give up and ask the Concierge when we discovered the right lift at last! And it became apparent that the lass had been confused because other carparks don’t have a mezzanine between LG and G, and other parking aisles beginning with 2 are on level 2, not M. She thought I was wrong, and so led me on a wild goose chase whilst trying desperately to help.

Not to worry. I now fished out the green chip and posted it into the payment machine for validation. There was a low height machine – well done, Westfield! The chip seemed to come straight out again but I was assured it had been validated. I can imagine if there hadn’t been an assistant there I (and others) would have kept retrying to enter it until the machine made a sound or displayed something on the screen. Oh well, I know for next time!

Now to find my car. Hang on, other people had parked up since I’d made a mental image, and so I couldn’t see it across the carpark any more! The lift was at aisle 201 so I had to push almost the whole way across the carpark, past 25 rows of cars, over several inverted V shaped metal ramps, nearly getting stuck each time. I’d only had to pass one ramp on the way from my car to the lift so I’m still not sure whether I took the same lift back again!

All’s well that ends well, and I suppose I managed the trip on my own – and there were none of the whirly ramps that I feared. But I was almost at the point of panicking when not only could I not find the lift, but nor could the member of staff who was “helping” me. Next time, I’ll park elsewhere – and when all else fails I’ll remember there’s a concierge service on level 1.