Archive for January, 2012

Disabled People’s Protest In Oxford Circus

This morning I got up very early and (with help from my wonderful partner & carer) got dressed, drugged and ready to catch a train to London.

After the normal mess around with trains and alike we made it to Euston station in a fairly bright mood. We decided to save some money and roll down to the DPAC meeting point (MacDonalds on Regent Street at 11.30am) which took a while. Luckily for me, the first face I saw was that of blogger Latent Existence which was a lovely surprise, especially when it transpired we had actually met at an action in Birmingham ages ago. There was a bit of milling about whilst the plan was explained to us;

  1. Collect a D-Lock and keys.
  2. Get into place at Oxford Circus (where Oxford Street & Regent Street cross).
  3. When the lights change UK Uncut activist would run across with a chain which would have each end attached to a lamppost.
  4. Wheelchairs were to roll over to the crossing and line up along the chain. 
  5. Lock the wheelchair to the chain and start protesting!

Whilst waiting for it to begin I spoke to a few journalists that had found us and explained my reasons for being there;

I wanted to protest against the both the Welfare Reform Bill and the cruel way it effects disabled people & children as well as the associated vilification of the disabled, poor and vulnerable. The government has decided to combat a fraud rate of 0.5% that they will take 20% off Disability Living Allowance by re-branding and reforming it into Personal Independence Payments (PIP). In doing so they are removing the assistance from DLA/PIP from 199 genuinely disabled people for every 1 ‘fraudster’* they catch. So they can remove so many they have made the criteria for PIP even more stringent than with DLA and they are including regular repeat assessments – regardless of whether your disability can ever improve or not. I wrote about how important my DLA is to me and the struggles I had obtaining it recently. The Responsible Reform Report (dubbed the Spartacus Report) details many areas of key concern better than I could here and it makes interesting reading if you fancy it.

The Conservative led government has done what it always does when they want to cut benefits to the poor and the vulnerable. First they leak press stories vilifying the targets, then when public opinion is on their side they strike with cruel reforms & cuts. We’ve been watching over the last couple of years as more and more horrid and twisted headlines about fake disabled people, scroungers and those seeking an easy life on ‘lavish’ benefits have filled up our press. I’ve popped some examples of recent press headlines on the right. All of these are real and all of them have helped shape public opinion. We’ve seen disability hate crime soar up by 75% and most I’ve spoken to have noticed it. I blogged this December about my experiences at the local Christmas market and I’ve been stopped in the street by strangers who ask me “Do you really need that wheelchair or are you just pretending?”. It’s both annoying and painful but still, I’m lucky that I’ve not been on the end of some of the violent abuse that many others cite having experienced.

To make it all the more poignant, yesterday was Holocaust Memorial Day. A day during which we remembered those who suffered and died at the hands of the Nazi party. The party wished for racial purity and in 1933 began forcibly sterilising disabled people under the “Law for the Prevention of Hereditarily Diseased Offspring”. By 1939 they began “euthanising” children born with severe defects and within months the criteria for eligibility for “euthanasia” was both relaxed and extended to older children, adolescents, and adults. But before this started happening the Nazi propaganda mill tried to make sure that the public were on side with gems like this poster:

A German propaganda poster from 1938″60000 Riechmarks, this is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow Citizen, that is your money, too.” It’s so similar to last years tabloid headlines it chills my blood looking at it.

That’s why I joined the protest. That’s why I and many others chained ourselves in our wheelchairs across Oxford Circus. We see what is happening, how our rights are being eroded away and how thoughtless government propaganda is ruining our right to live free from fear and intimidation. We see all this and we are angry. We won’t go down without a fight. Even if it near kills us.

The protest itself was brilliant. No sooner had we done up our D-locks and settled into a chorus of “No ifs, no buts, no disability cuts!” than the sound of sirens filled the air. The police & some people that I assume were fancy shop security (given the odd beefeater meets bellhop uniforms) surrounded us quite quickly but did nothing. The atmosphere was great, angry yet positive, vulnerable yet strong as steel. We had a wonderful time and met some fantastic people. I spoke to journalists, independent media and radio crews and watched as some amazing people got filmed by the BBC & Sky. We had initially thought we would get an hour at the most before the bolt-cutters cam out and we were either arrested or dispersed. I think that because of the amount of media attention we had the police were loathe to act and risk bad publicity. They also would have had a big job trying to arrest all of the wheelchair users as I don’t think their vans are particularly accessible. Still, by 12.45 the police were telling us that we could either move over and just block one side of the road (the street behind us was strewn with abandoned buses) or we could stay and they would take ‘appropriate action’. Many of those chained up expressed a wish to stay and risk arrest simply to show how serious they were about protesting the Welfare Reform Bill. Sadly we had to leave before the end as we had a train to catch but twitter informed me that everything broke up peacefully at around 2pm with no arrests or trouble.

To finish on a brighter note are some pictures from today’s demo;

The wheelchair line getting into place.

Me and my partner fashionably sporting chains and a Green Party flag. (Picture via @HeardInLondon)


DPAC protesters – not all of us use wheelchairs (Picture via @HeardInLondon)

Legal Observers – the person in orange was from Green and Black Cross, the person at the back with a camcorder works for the Met.

* let us remember that this term also includes disabled people that aren’t technically ‘disabled enough’ to receive DLA.

Media Links (edited to add more as they arrive):

    DPAC & UK Uncut – Message From The Invisible

    I’m getting up very early tomorrow morning to head to London with my other half. We are planning to join with other sick, disabled and UK Uncut activists to try to send a message to the Coalition. We will not be punished for deficit caused by the excesses of the City. We will fight the damaging changes the Welfare Reform Bill is threatening to inflict and we will not let the government off lightly.

    You can read more about it here – UK Uncut Press Release & at the DPAC website.

    If you can make it that would be great, though I totally understand peoples ability to be there in the flesh is limited by way more than just will alone.

    You can also help raise awareness by blogging about it, bugging the media to get the message out and tweeting about it using the #invisibleinvincibles, #dpac & #ukuncut hashtags.

    See you on the other side!

    Child Maintenance Reforms

    Today the lords vote on the welfare reform bills changes to child maintenance.

    Starting from 2013, the government proposes charging:

    • £100 as an upfront fee (or £50 for parents on benefit) for those who want to use the future CSA. Only “Victims of domestic violence” will be exempt (although there is no detail on how this will be proved or checked).
    • An on-going charge of between 7% and 12% on any maintenance paid to parents who rely on the future CSA to collect their child maintenance, as well as an extra 15-20% charge added to the non-resident parent’s payment. 

    Ian Duncan Smith says the bill will incentivise parents to make private arrangements with regards to welfare. He also believes it will make parents seriously consider whether separation is necessary.

    This is really unfair for many reasons:

    • It punishes single parents who have partners that refuse to engage with the CSA by charging them.
    • It’s sexist; 97% of those that will be affected by the changes will be female. Putting the apparent emphasis back on the Tories old favourite. Punishing single mothers.
    • Over half of the people in receipt of child support get less than £20 per week. By adding these charges it makes going through the task of claiming pretty pointless. Go through all that trouble for less than £10 extra support? You’d probably be better off buying lottery tickets.
    • It puts people who are financially dependant and wishing to leave a relationship in a even greater position of vulnerability. Stay in a unhappy relationship and risk the potential damage that can cause? Try and negotiate a separation and hope that you partner plays fair? Because once you express a wish for separation you can’t really take it back. Try to keep your children with the knowledge it might mean living in poverty? If we look at the kinds of people most likely to financially dependant we see women, people with disabilities, people with mental health problems and people in abusive relationships*. That list is by no means exhaustive.

    In a happy turn of events a Conservative Lord who helped set up the CSA, Lord MacKay, is pushing for an amendment this afternoon which parents with main care of children who have no alternative but to use the CSA to get maintenance for their children would be exempted from government charges. He says;

    “Of course we all agree that it is better for voluntary arrangements. But that is not the world we live in, unfortunately. You require the co-operation of another party and you cannot force them to give it.

    “When a woman – as a typical example – has taken all reasonable steps and done all she can to reach an agreement but cannot manage it, I do not agree that she should be charged by the CSA for her application … That is utterly unfair. If anyone is to pay for that, surely it should be the person who has caused the difficulty by trying to escape from his moral obligations.”

    I, like many others are hoping to see a Conservative and Lib Dem rebellion allowing this very sensible amendment to pass. Of course it won’t mean the end of the issue if it does. When the bill is returned to the House of Commons the Conservatives have vowed to overturn the amendments. This is why we need to keep up the pressure.

    This issue isn’t just a feminist issue, it’s also a disability and mental health rights issue and deserves support from across the board. We should all help spread the word.

    If you want to get involved have a look at Gingerbread‘s website and campaigning page.

    * even though the legislation says that those people will be exempt we know that proving domestic abuse can be extremely hard if not impossible in many incidences of psychological abuse. Especially if it doesn’t go to court or get reported to the police.

    Psychological Interventions in Chronic Illness?

    I follow and talk with a fair amount of disabled people and disability rights activists and I’m starting to notice that many are deeply deeply distrustful of doctors that suggest that a psychological intervention could help them. I know at one time I used to feel much the same and over the last year or so I have changed my mind. As I think the whole area is really problematic and potentially damaging so I have decided to write a little blog post to try and unpack some of the issues around it as I currently see them.

    One of the first things many wish to impress on me (when talking about their disability/chronic illness) is that they are not making it up. I understand the urge to do that. In my daily life I spend an awful lot of time being asked about my condition by doctors, the DWP, cab drivers, new acquaintances, old acquaintances, people from the council and many many more. Most of the time I get hit with an initial wave of denial by them, followed by eventual – if not limited – understanding. I’m sure many of my disabled readers, especially those with invisible or not very well understood conditions will be familiar with the following conversation;

    “So if you don’t mind me asking, what’s wrong with you?”
    “I’ve got a lot of abdominal damage from multiple surgeries.”
    [insert queries about my need for mobility aids]
    “What do you do then?”
    “I don’t work. I can’t.”
    “There must be something you can do.”
    [insert a long explanation about why I am unemployable until the penny drops]
    “Oh, I’m really sorry.”
    [uncomfortable silence]

    All throughout it you are placed on the defencive. You are made to explain your condition, the effects it has on your life and how limiting it can be. Of course the majority of it actually stems from the ‘questioner’ not wanting to believe that serious disability can just hit out of the blue. Most people know it is some thing that can happen, the same way they know they could kill someone by speeding. They simply don’t believe it will ever be them and being face-to-face with someone telling them “I was like you until ‘x’ developed, now I can’t work and need ‘y’ assistance to do simple tasks” makes them feel uncomfortable. When they feel uncomfortable they try to ease that by doing things like denying there is a issue, trivialising it, trying to determine what we did wrong (often morally) to deserve it or they start to focus on the nitty-gritty of our chronic illness Columbo style.

    Whilst this may make them feel better, it makes many of us feel like they don’t understand or don’t believe us. In the long run it makes us more defencive each time it happens.

    Many of us will have also had mis-diagnosis in our past. We all know a CFS sufferer who was wrongly thought to be malingering. My chronic pain was put down to my PTSD until scans combined with my medical history proved otherwise. I know a chap with rheumatoid arthritis that was initially told it was an old sports injury and should simply be ignored. We’ve fought tooth and nail for our disabilities to be recognised and to get a level of acceptance and consideration.

    So, when the day comes that one of your doctors pops up and says counselling or anti-depressants can help with our condition we think… Wait a second! We have a physical condition. Those treatments are for mental health issues. We get angry or depressed because once more it seems yet another professional is trying to say it’s all in our heads. It sounds like they are undermining our diagnosis.

    The thing is, I actually believe that is often not the case. I believe it is simply sloppy communication from the doctor combined with a certain level of (natural) defensiveness on the patients part.

    Having a chronic condition or disability is very often stressful in itself. Pain causes mental stress in most. Not being able to get up because you are simply to exhausted to move also causes mental stress. Not being able to make it to the loo, get your mobility aid into a shop, wash yourself or make a glass of water when you are thirsty all cause additional stress. I don’t believe that most would argue that point.

    Stress and the low-moods that come with it are draining. I don’t think many who have dealt with either would argue that either. They impose a spoon-tax on everything making each activity a little more costly. If, through pacing, you’d normally be able to cope with getting dressed, making lunch, doing some painting and visiting family in the evening when you are psychologically stressed you may only be able to manage two of the four.

    This suddenly makes managing psychological/ mental stress more important than ever before. It’s also something that most of us are not trained to deal with. It becomes vital if you want to live to the fullest to find away of managing not only your pain/ fatigue but also balancing your mental health. This is where counselling, CBT and anti-depressants can come in. Fenton & Stover (2006) wrote a paper showing links between mood disorders and those with cardiovascular disorders or diabetes. It shows the way that living with a chronic condition can make developing a mood disorder more likely. It makes a case for doctors pushing for holistic care of both the body and the mind.

    In my experience I’ve found that when basic CBT is packaged as a Pain Management programme or Expert Patient Programme for people with chronic illness then patients will accept it as helpful. When it involves going to see a overt member of the mental health team they get very upset. I think there are a few reasons for this;

    • The defensiveness most people who have chronic conditions (especially invisible ones) build up whilst fighting daily for recognition.
    • Poor communication from medical practitioners who don’t explain CBT etc… are being offered to help manage the patients mental well-being whilst they try to live with with a stress inducing condition. 
    • Doctors not recognising that the patient will have probably built up a defensiveness around the issue so they don’t take it into account when suggesting management techniques.
    • Sometimes there is also a lack of recognition that not everyone needs help managing mental well-being.

    I believe that we need to accept that living with chronic conditions and disability in a disablist society will naturally cause mental stress and that psychological interventions are often a very good way of managing that stress. Knee-jerk hostile reactions to doctors saying CBT or therapy can help manage life with CFS/Chronic Pain/Diabetes/life after an amputation/MS etc. will not help anyone. It also belittles those who have found help through those fields which is bad form. I’m not saying it is something that everyone will benefit from psychological interventions that would be foolish. It would be like saying all people with mobility difficulties will benefit from a wheelchair, it simply isn’t the case. What I am calling for is two fold;

    • I would love to see campaigners and people with chronic conditions/disabilities no longer automatically assuming that any mention of CBT or other interventions designed to help manage mood is the medical profession denying or minimising chronic illness/disability. In some regards, the push to try and help people get a early intervention is a direct acknowledgement to how difficult living with them can be.
    • I also would like to see better training of medical professionals to help improve their communication with patients who have chronic illnesses or disabilities. Especially with regards to suggesting ways of managing conditions and the heightened risk of developing a mood disorder for those with long term illnesses & disabilities.

    Fenton, W. S. & Stover, E. S. (2006) Mood disorders: cardiovascular and diabetes comorbidity. Current Opinion in Psychiatry, 19, 421–427.

    * For those who don’t know what CBT is here’s a very quick explanation. CBT is Cognitive Behavioural Therapy. It is the idea that feelings/emotions, thoughts/cognitions, and actions/behaviours are interlinked. It looks at the way feeling crappy because you are in a lot of pain can lead to negative thoughts which can lead to us behaving in negative ways (like trying to push ourselves to do too much, ignoring sound medical advice, treating others poorly, self-harming etc…). There are academic criticisms of CBT but none are of the basic tenants (emotions-thoughts-actions being connected). They involve worries that it doesn’t help as well as other interventions with regards to serious psychiatric disorders like schizophrenia or bi-polar disorder. They also suggest that the focus on it is so strong it makes getting funding to look at other possible interventions difficult.

    Homoeopathy For Domestic Violence

    Full disclosure: I don’t believe that homoeopathy has any effect that is greater than a placebo administered in an identical fashion. I do not believe that by slapping some a ‘solution’ of water and a couple of grains of a compound (often so dilute there isn’t a molecule of the compound in the water) with a leather board causes it to gain mystic healing properties derived from that addition (whilst forgetting all the well diluted molecules of urine and excrement in our tap water). The 10^23 campaign – Homoeopathy: there’s nothing in it – has more information. I take great exception to companies like Boots selling it as if it’s anything other than sugar pills because people assume that if it didn’t work it wouldn’t be on sale. The subject usually fires me up as does any other form of quackery or snake-oil selling. I don’t like the abuse of statistics or the abuse of the needy/desperate.

    Until yesterday I assumed that homoeopathy normally dealt solely with illness and disease, but no. They also claim to have ‘cures’ for domestic violence & abuse.


    This drek is offensive to me on so many levels – even ignoring the fact Homoeopathy is nought but pseudoscience.

    It suggests that abuse is something that can be avoided. Take a sugar pill, you won’t get abused. Honestly. They argue that abuse happens to people with low self esteem so taking a drug to improve that will stop the abuse happening. On the surface that seems sensible I guess. A confident person surely wouldn’t put up with someone abusing them. Wrong. Some abuse slowly builds up whilst the abuser slowly destroys the victims self confidence so that they don’t complain when things get really abusive. In other cases it really does come out of the blue. A partner may snap. A carer may decide they want to rape. A trusted family member may decide to start stealing from you. No amount of confidence or self-esteem is going to act as a shield. It plays into the pernicious idea that abuse can be avoided and that victims are simply people who didn’t try hard enough. This kind of classic victim-blaming (or Just World fallacy) can add to the tremendous guilt and pain often felt by many who live through abuse.

    It suggests that abusive partners/carers/people can be ‘cured’ by talking the right sugar pills. Firstly this only works if the people that are being abused/ being abusive realise that they are. In my experience many don’t. Most abusive people think they have anger issues or are control freaks or have to live with a really annoying person. They don’t wear the label of abuser clear as day. Many victims of abuse don’t realise that it is abuse. We are all told that relationships involve some give and take and there will always be occasional conflict between people who care for each other. These people often just think they are in a normal (if not rather intense) relationship. If an abuser does realise what they are doing and wants to take steps to help themselves one could argue that relying solely on pharmaceutical interventions (especially homoeopathic placebos) will not be magnitudes less effective than engaging in meaningful psychological therapy.

    Secondly it draws on the quacks favourite, selling sugar to the desperate and promising miracles.  Many victims of abuse, myself included, believe(d) that by staying with their partner and just finding the ‘right’ way of behaving/thinking they can make it better. They can make the abuse stop. After all they are frequently being told they are the cause of the pain. Telling them that all they need to do is pop some homoeopathic Strychnine (Nux Vomica) into the abusers diet is feeding them false hope. If I wanted really to put Strychnine in my abusers diet I would probably try a bigger dose than 1 molecule in 1,000,000,000,000,000,000,000,000 for maximum effectiveness*.

    All in all this is just another example of why the homoeopathy industry should be regulated and exposed to the public.

    * disclaimer: I do not condone murder or attempted murder

    Fighting For Amendment To The Welfare Reform Bill

    Today we are fighting for an amendment to the Welfare Reform Bill (WRB). We [a large group of disabled activists, disability charities and politicians] believe that the following amendment will reduce some of the harm the bill in it’s current form may well cause.

    The amendment is as follows:

    Clause 80 – Amendment 50E


    Page 58, line 26, at end insert—

    “( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

    (a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

    (b) disabled persons organisations to be involved in formulating the assessment process.


    When the ESA came into effect the ATOS assessments were never trialed first, and we now have a 40% (70% with legal/advocate support) of their negative decisions being over turned at appeal tribunals. I was one of those people, in fact many of my friends were in that category. We can’t let that happen again with DLA/PIP. We need to spread the word about this amendment and try to convince the Lords to vote for it. We have a few hours but please, do what you can.

    If you know a Lord on a social network site, if you have access to their email address (many keep them private) or if you’d like to write to them about other issues with the WRB then please do. There is a list of names of lords (complete with their party affiliation) here.

    • If you chose to write to them simply address your letter to [Name of the Lord], The House of Lords, London, SW1A 0PW. 
    • You can fax individual Lords, send it to 020 7219 5979. 
    • You can even telephone the main parliamentary switchboard and ask if you can be connected by calling 020 7219 3000 or you can leave a message by calling 020 7219 5353.

    The House of Lords does not except ‘bulk mail shots’ so every letter or fax needs to be individually addressed

    DLA, My Story

    As the Welfare Reform Bill debate with regards to DLA is happening this week I thought I’d share my DLA story.

    I became disabled at the start of 2009 and applied for DLA about 7 months afterwards. The delay was simply because I was having trouble coming to terms with the reality that my condition wasn’t ever going to improve – something most people who become disabled tell me they’ve gone through at one point or another. I didn’t start receiving DLA until mid 2011.

    The delay was not because I wasn’t disabled, not because I didn’t send in all of the necessary letters but because I had had a blundered ATOS assessment for ESA. You see, between sending in my application and the DWP making a decision I received the results of my ESA work capability test. ATOS had decided I was fine. Naturally I appealed and eventually (Sep 2010) won my appeal at a tribunal. In the rejection letter sent by the DWP with regards to my application I was told that they had decided to take the word of one ATOS assessment over that of all my GP, consultants, psychiatrist and other health care professionals with a intimate knowledge of my case. We lodged an appeal and in 2011 it was heard. We won and were granted both higher rate mobility & care components indefinitely.

    Of course, between 2009 and mid 2011 the costs related to my disability didn’t magically disappear so I became totally dependant on my loved ones. I found that as I can walk a little in my house (it hurts, but the exercise is worth it) I was only eligible for a manual wheelchair from the NHS. Sadly my house is surrounded by hills as well as steps which stopped me being able to go anywhere under my own steam. I needed someone to be with me every time I wanted to wash, I needed someone to be there to cook meals for me or I wasn’t able to eat (as we couldn’t afford ready meals or pre-prepared snack food). As a result of the stress placed on me by fighting multiple appeals, having no money, not being able to see my friends as well as coming to terms with my physical disability and living with PTSD I attempted suicide on a number of occasions.  I was so very miserable, everyday was empty. All that happened was I would wake up, be in pain, try to keep myself sane then go to bed in the evening. People were full of ideas, they were sure that I could get a free electric wheelchair from a charity or that some body would pay for me to have a social life. Surely if I just explained I was registered disabled then I’d get lots of extra help? One thing I quickly discovered is that many people don’t understand is that there is no ‘national register of disabled people’. You don’t get sent a card that ‘proves’ you are seriously disabled in the post, you need DLA to prove that you are. Without it we couldn’t get a bus pass, a disabled persons rail card or carers allowance and local things like getting a blue badge or onto the disabled persons housing register were made extremely hard. My life revolved around waiting for the appeal and trying my hardest to fight my mental health problems to stay alive.

    As you may well imagine, when my DLA came through my life turned around. Suddenly I was eligible for a bus pass which meant I could afford to go places. I was able to afford a new mattress to reduce the pain my old one was causing at night. I was able to go to the swimming pool and start getting involved in local community groups. My partner was suddenly eligible for carers allowance and was finally receiving the financial support he required to keep on preforming that role. We even managed to get an electric wheelchair so that I could travel from a-b without needing to be pushed.

    Even now as life has started to settle down I can’t imagine living without my DLA. It pays for taxis so I can go visit friends or leave the house quickly if the need arises, something I need to have planned a few days in advance to be able to do otherwise. It covers the cost of buying in pre-prepared meals for when my partner isn’t able to cook. I pays for mobility aids when they are required and helps cover the gap between our tiny amount of housing benefit and the amount our private landlord charges to live somewhere big enough for my mobility equipment. It’s also the only independent income I have, so on a more serious note I know that if I am ever being abused (as statistically I am likely to be as a dependant disabled woman who will likely spend her life in poverty) I will have a little money to escape with. I will always be able to have a little financial control over my life which is something I appreciate more and more every day.

    I wish the story ended there. Sadly if the PIP is introduced (as the government says it will be) I will probably loose this life line. Currently I receive higher rate mobility support because I am ‘virtually unable to walk’. These criteria are changing. Now they are looking at peoples ability to ‘mobilise’. Because I can do the following; once a day I can push myself 200m on a flat level surface in my wheelchair – I will be deemed as being able to mobilise enough to not need support. It won’t change the fact that I can’t get 50 out of 200m towards my local bus stop in my manual chair alone. It won’t change the fact I can’t drive so need taxis (which don’t come cheap). It won’t change the fact my local ring and ride service now charge for the privilege of using them (even if you have a free bus pass). Getting from A-B will always be much more expensive for me than it would be for someone without mobility issues. I just won’t be getting any money to help balance the cost. I will probably have my care component downgraded too as the PIP criteria doesn’t appear to be particularly friendly to mental illness, especially things like PTSD where the effects vary wildly from day to day, hour to hour and are often reactionary in nature.

    A cut to this income will not only destroy my ability to participate in society and volunteer in the local community, it will actively damage my health. I will no longer be able to afford to exercise at my local pool. I will loose touch with friends and family as I stop having money to leave the house and partake in social activities. The depression, anxiety and stress associated with my PTSD will get worse as I become more dependant on the goodwill of others and start to once more loose all personal agency. Eventually I may return to the state of misery that made me feel that I would be better of being dead than living a half-life full of pain and completely dependant on unpaid, overworked others.

    This is why I’m fighting the proposals and why I think you should too.

    Edited to add: You can read other stories like mine at Spartacus Stories

    The Search For Housing

    As you probably know, I became disabled back in 2009. Today I’m still living in the same privately rented house I was then.

    My current house is pretty decent on paper; it’s in a nice area, it’s close to good bus and rail links, it’s got a nice garden, a good kitchen and it’s plenty big enough for my partner & myself and our housemate. Sadly for me, it has stairs & steps galore. A set of stairs leads to our upstairs (and only) bathroom, steps lead down to our front door and steps lead out from the back. As we have a shower over a bathtub there is even a big step to be covered if you want to wash. I can’t really manage steps, lifting my leg up to go up a step (especially my right leg) pulls on my damaged abdomen and that causes severe pain. I’m sure you can see why this is an issue.

    Back in 2009, when we first discovered my condition was permanent we started asking ourselves how we could go about moving to somewhere that wouldn’t leave me unable to wash without assistance as well as stranded upstairs on bad days and trapped in the house (as the wheelchair won’t climb steps itself) most days. I was, as I still am, unable to work and my partner had taken on a very low paid part time job with Royal Mail so he could balance his need to support me and his need to earn. We were not getting any ESA or DLA because of appeals and alike and we were only getting a tiny bit of housing benefit because of the way Birmingham City Council deals with couples (we sorted it after a 20 months of arguing).

    Naturally we started looking at privately rented properties online to begin with. We just wanted somewhere which;

    • was on the ground floor or could guarantee working lifts – because there was no point moving to somewhere with stairs.
    • had level access – so I could get my wheelchair out front door and onto the street.
    • had a level access shower – I can’t bathe without a lot of help and it always causes extra pain so a walk-in shower would be ideal.
    • was in range of my GP, both of the hospitals I attend, my psychotherapist and my psychiatrist
    • had somewhere we could store my wheelchair – be it a garden we could put a secured shed in, a garage, a large cupboard in the house or a decent sized hallway.
    • ideally had a second bedroom so my partner could sleep when I was up all night with pain – but we were also aware how that would be a luxury a couple on less than £7k a year would ever be able to afford.

    Of course we found nothing. Purpose built flats or expensive re-purposed buildings were the only ones with level access. Most of the ‘flats’ in our price range were a couple of converted rooms in a HMO (houses in multiple occupation) with steps all over and no where to store mobility equipment and more often than not no shower, let alone a walk in one. Any places which had walk-in showers described them as ‘wet-rooms’ which added an extra large price tag to the property. We quickly began to realise that accessible meant; spacious, purpose built apartment with storage space and a wet room and all of those things are pretty desirable to able bodied folk too. It didn’t talk too long to realise we were never going to find a 1 bedroom accessible home privately for less than £650pcm in Birmingham – which I assure you is pretty much double what we could have ever thought of affording at that point. Nowadays it’s about 1/3rd more than we could safely afford.

    We spoke to someone from the council who explained that if we wanted to go on the council housing register we’d have no hope unless we applied at the same time to be on the disabled persons housing register. They also explained that we’d have no hope of being accepted onto that without being in receipt of DLA. So until my DLA came through we were stuck where we were.

    The next step was calling Social Services and arranging for an Occupational Therapist to assess us so we could get some adaptations in our home.They kindly fitted us with grab rails in the bathroom, a toilet seat raiser, a extra banister on the stairs and a railing to help with the steps in the front garden. All of which made getting around the house a bit easier and have reduced the number of falls I have quite a bit but none deal with the problem of the severe pain caused by using stairs. Because we are in a privately rented property and I can walk (albeit with a lot of pain) we couldn’t have a stairlift put in so the worst of the problems with the house were left unresolved.

    Eventually, in 2011 my DLA was awarded and we got onto applying for council housing. A fortnight ago (Jan 2012) we were awarded points and placed on the disabled persons housing register. Hurrah! Last week we got a call inviting us to go see an adapted property that would suit our needs and we naturally jumped at the chance to go see it.

    It took three buses to get there and we soon discovered that it was in another area where whoever built it clearly thought lowered kerbs were optional extra they could do with out. The property was in a nice little cul-de-sac with a lovely community feel to it hidden away in a slightly rough bit of Birmingham. Looking at the building we could see it was two storey, but we assumed we were either a downstairs flat or that the building had a lift. The rep turned up and opened the front door and we were immediately greeted with this sight;

    Needless to say it wasn’t quite what we expected from a level access home suitable for a wheelchair user… I stayed outside in my chair whilst my partner went to have a look around (because if it was really good we thought we could contact social services and ask about getting a stair/wheelchair lift put in). Where we need a walk-in shower this place only had a bath tub. Where we need wheelchair storage this place had none. It also was missing white goods and most of the sideboards in the kitchen too. You might not be surprised to hear that we turned it down. The housing rep who was with us was mortified to realise that we’d been sent to this property so kindly phoned the people responsible and gave them both barrels on our behalf.

    The search is still on and I’ll keep you informed of anymore hilarious housing mishaps along the way.


    Report By Disabled People Slams Government DLA Plans.

    Today a Report compiled by disabled people, led by the wonderful Sue Marsh & Dr Sarah J Campbell has been released. I’m posting the body of the press release here.

    Revealed: New Report shows overwhelming opposition to coalition’s disability benefit reforms kept hidden by the government Conservative Mayor of London heavily critical of government’s plans for Disability Living Allowance

    The report was entirely researched, written, funded and supported by disabled people.

    A report published today (9 January) finds that Government misled MPs and Peers over the
    hostility to disability benefit reform. It finds that Parliament has been given only a partial
    view of the overwhelming opposition to the Coalition’s planned reforms of a key disability
    benefit, Disability Living Allowance (DLA). It finds that this opposition was previously not
    released to public scrutiny by the Government.

    It is based on the responses to the government’s own consultation on its planned DLA
    reforms, which were only made public once disabled people requested them under the
    Freedom of Information Act. Findings included:

    • 98 per cent of respondents objected to the qualifying period for benefits being raised from 3 months to 6 months 
    • 99 per cent of respondents objected to Disability Living Allowance no longer being used as a qualification for other benefits
    • 92% opposed removing the lowest rate of support for disabled people
    In all three cases, as well as many others, London’s Conservative Mayor, Boris Johnson also
    objected to the proposed changes. He said in his response

    “The Mayor would call for the Government to retain the three‐month qualifying period as the increase to six months will mean that people with fluctuating conditions have increased difficulty meeting the qualifying period. People with fluctuating conditions face the same barriers that all disabled face in relation to higher costs of living and DLA is essential to maintain a decent quality of life.”

    “We would recommend that the passporting system remains the same as under DLA as it has worked well when signposting people to additional benefits to which they may be entitled.”

    “The Mayor does not support this change, as those on the lower rate care component may have additional costs as a result of their impairment but may lose their access to this benefit as part of the proposed removal under the reforms.”

    The Mayor also objected to the government’s strategy for clamping down on disability benefit fraud, arguing:

    “The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.”

    The Mayor’s views were representative of the overwhelming majority of responses to the
    Government’s consultation..

    The new report, Responsible Reform, suggests that the government’s DLA consultation
    breached the government’s own code of practice and was “highly misleading”. Researchers have used the Freedom of Information Act to obtain more than 500 responses
    to the consultation that were submitted by disabled people’s organisations, disability charities and other groups – including the response submitted by Boris Johnson – and have carried out the first detailed, independent analysis of those responses.

    The analysis showed overwhelming opposition to replacing DLA with a new Personal
    Independence Payment (PIP). The government also plans to cut spending on DLA/PIP by

    The new report has been researched, written and funded by sick and disabled people, thousands of whom contributed to the research through their use of social media.
    Its authors now hope to use the report to persuade members of the House of Lords to back
    an adjournment debate calling for a pause of at least 6 months. In that time, plans for PIP
    should be reconsidered with the views of disabled people properly taken into account.

    The report has already been backed by organisations and disability experts including

    Disability Alliance
    Papworth Trust
    Bert Massie CBE &

    Disability Alliance ‐ “The Government’s mis‐portrayal of the DLA consultation response is
    truly shocking and could represent a betrayal of the process of consultation and engagement with disabled people. The Government has refused to provide a justification for a 20% cut in DLA expenditure and we fear that the same faulty rationale, misunderstanding of disability and higher costs of living and poor judgement exposed in this report sadly underpin the basis of the entire reform plans.”

    Paul Farmer, Chief Executive of the mental health charity Mind, said:

    “The ‘Responsible Reform’ report is essential reading for everyone with an interest in
    Disability Living Allowance (DLA) reform including the Government and Department for
    Work and Pensions Select Committee. It is a vital contribution to the debate on reform and a
    huge achievement for the volunteers who have produced it.
    “As well as forensically deconstructing many of the arguments offered by the Government
    for their proposed reform, the report shows that much of the rise in claimants over recent
    years has been down to better access to the benefit for people with mental health problems,
    whose needs are often fluctuating and invisible.
    “Rather than getting out of control as the Government claims, DLA has been increasingly
    going to people who really need it. The proposed 20 per cent cut to the budget will have an
    enormous impact on many people with illnesses and disabilities, and we remain very concerned about the unintended consequences this could lead to.”

    Papworth Trust supports this report’s concerns that the decision to reduce DLA by 20% may
    have been based on incomplete or misleading data about the reasons for growth in DLA.
    Our recent survey found that almost 9 out of 10 people would have to cut back on essentials
    such as food or being able to get out and about if their DLA payments were reduced or
    stopped under PIP. We believe that the proposed 20% cut will push more disabled people
    into poverty.

    Given that this report was entirely researched, written, funded and supported by the people
    that these changes will affect, we believe that the questions it raises should be answered by
    the Government.

    Richard Hawkes, Chief Executive of disability charity Scope said:

    “This report once again reveals the very real concerns disabled people have about the
    government’s reform of Disability Living Allowance.
    “We know that this benefit is a lifeline for millions of people and families.
    “It gives them the opportunity to meet the extra living costs they incur as a result of living
    with a condition or impairment and we know that people are genuinely worried about the
    impact these reforms will have on their quality of life.
    “We urge the government to listen and act on these concerns and to ensure its replacement
    takes into consideration all the barriers disabled people face in everyday life so they can live
    independently and play an active role in their local community.”

    Sir Bert Massie CBE said:

    “The Government’s proposed changes to the system of financial support for disabled people,
    from Disability Living Allowance to Personal Independence Payment, has caused anxiety to
    many disabled people. I have always found the explanations offered by the Government to
    be unconvincing and I therefore welcome this report which analyses the evidence on which
    the decisions were based. It shows that rather than being broadly welcomed by disabled
    people and disability organisations the new proposals were subject to widespread criticism
    and alarm. I hope this report will result in the Government reviewing its proposals so they
    enhance rather than damage the lives of disabled people.

    Simon Barrow, Co‐Director of the beliefs and values thinktank Ekklesia, said:

    “This is an excellent piece of research. There remains a gaping chasm between the government’s rhetoric about maintaining support for disabled people and the actual
    evidence about the impact of the changes and cuts it is imposing. The voices of those at the
    sharp end are not being listened to in a way that shapes policy. The concepts of justice
    dignity and social solidarity are being eroded and replaced with a piecemeal approach to
    provision which sees care as essentially voluntary.”

    Sue Marsh, the disabled blogger and activist who led the research, alongside Dr Sarah J
    Campbell, said:

    “For some years now, poorly designed Social Security reforms have created a “trust deficit”
    among disabled people towards government.

    “We believe that reform must be measured, responsible and transparent, based on available evidence and designed with disabled people at the very heart of decision‐making. Currently, we do not believe this to be the case. 
    “While disabled people welcome reform of DLA where it will simplify the system and better support their needs, they do not want a new benefit. They believe it is a costly irrelevance during a time of austerity.
    “We urge members of the House of Lords – across party political boundaries – to take note
    of this research and the strength of opposition to the proposals. It is not too late for them to
    halt these deeply damaging reforms.”

    Another contributor to the report, Kaliya Franklin, said:

    “Cutting spending on DLA will increase the burden on local authorities, the NHS and
    community services at the very time they are seeking to find savings by reducing eligibility,
    particularly for social care support.
    “Sick and disabled people have voluntarily combined our skills, experience and talent to
    produce this report, demonstrating that if we are able to work in the way our conditions
    demand we can participate in the world of employment, but only if it is willing to receive us
    on our terms, with more flexible ways of working and participating.”

    Among the report’s conclusions:

    • Only 7% of organisations that took part in the consultation were fully in support of plans to replace DLA with PIP
    • There was overwhelming opposition in the consultation responses to nearly all of the government’s proposals for DLA reform
    • The government has consistently used inaccurate figures to exaggerate the rise in DLA claimants
    • The report shows that nearly all of the recent increase in working‐age claimants of DLA has been associated with mental health conditions and learning difficulties.
    • Between 2002 and 2010, the number of working‐age DLA claimants – excluding
    • those with mental health conditions and learning difficulties remained remarkably
    • stable
    • 98% of those who responded opposed plans to change the qualifying period for PIP from three months (as it is with DLA) to six months
    • 90% opposed plans for a new assessment, which disabled people fear will be far too similar to the much‐criticised work capability assessment used to test eligibility for employment and support allowance (ESA)
    • Respondents to the consultation repeatedly warned that the government’s plans could breach the Equality Act, the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities

    Other Points to bear in mind:

    • The government’s response to the consultation on its DLA reforms was published in April 2011
    • Discussion of the Welfare Reform Bill is due to resume at its report stage on 11 January in the House of Lords
    • The report was written by Sue Marsh, the author of the blog Diary of a Benefit Scrounger, and Dr Sarah J Campbell
    • Employment and Support Allowance is the replacement for Incapacity Benefit introduced by the Labour government in 2008
    • The research suggests that, although the number of people with mental health conditions claiming DLA has risen continuously over the last 15 years, only one in 100 working‐age adults is claiming DLA in association with a mental health condition. This is far lower than estimates of the population prevalence of more severe mental health conditions. This is a global phenomenon and unlikely to be related to the design of the UK benefit system.
    • The research also suggests that the rise in the number of people with learning difficulties claiming DLA is likely to be due to earlier diagnosis of certain conditions
    • Boris Johnson’s full response to the consultation can be found here:

    If anyone reading this want’s to get in contact with Sue Marsh please either drop me a line & I can pass on contact details or please visit her blog, Diary of a Benefit Scrounger.

    Please do what you can to spread the word.

    Exhaustion & Pacing

    I’ve been a bit quiet on here these last few weeks because I’ve not had the energy to do very much of note or to even write about anything. My desktop is awash with half started pieces that I’ve not been able to finish.

    This of course is part of living with my condition. Most people when they look at me see my wheelchair or my crutches and assume lack of physical mobility is the most disabling impairment I live with. When this first happened I too thought it would be the most disabling impairment too. Looking back over the last few years I can see I was wrong, exhaustion is by far one of the most disabling conditions I have to deal with.

    I can deal with not being able to walk without pain by using a wheelchair. I can deal with not being able to bend by using grabbers or asking for help. I can’t grab a ‘aid’ to help me when I’m too exhausted, both mentally & physically, to cope with talking, typing, watching a DVD or simply sitting up-right. The lights are on but no-ones home and that is so disabling I can’t really find words to describe it, yet I’m going to try in this post.

    Before I became disabled I didn’t really feel like there were limits on the amount of energy I could draw from (have a read about Spoon Theory analogy if you want an easy to digest description). Now things have changed. Personally, I find there are quite a lot of things that drain my available energy;

    • Pain – being in constant fluctuating levels of pain (varying between 5-8 on the pain scale) everyday saps at my reserves.
    • Severe Pain – when my bowel gets obstructed or partially obstructed the agony (between 7-9 on the pain scale) drains my reserves really quickly.
    • Hiding the pain also saps at my reserves. You may ask why I hide it? No body really wants to be around someone who can only say “It huurrrrtttts!” all the time. Sure, it’s fine with an acute issue like a sprained ankle. Less great with a chronic condition. 
    • Stress – too much stress causes my PTSD symptoms to flare up, it also causes me to tense up which increases my pain (which increases my stress… you see the cycle here). I also have a lower tolerance for stress before it all gets too much. Things I find stressful include dealing with people, being in a big crowd, raised voices (especially male ones), anger (be it overt or covert), feeling trapped, not being able to keep the house clean etc…
    • Sickness – throwing up drains my energy. Simply feeling sick does too.

    There are other things that do it too, far too many to list on a blog entry I should have finished days ago. Regardless, I spend much of my time too drained to get anything much done. I’ve been writing this tiny post for three days now.

    I deal with it by pacing, working out how much I can or can’t do and applying it to my daily activities – asking for help and support or using aids to do the most draining ones and stopping myself from doing things that will wipe me out. I know the walk to and from the kitchen costs me so if my partner is around I ask if he can do it instead. That way when he isn’t I have a chance of managing it. It’s painful having to always ask others if they can grab something for you or make you a cuppa when you fancy one but ultimately it’s less painful than doing it all then ending up trapped in bed writhing in pain (and needing them to do everything for you, rather than just grab a cup of tea).

    I’ve still not learnt to pace properly, I still do more than I my body can cope with regularly but I’m learning and that’s what’s important. If you’ve got any fab pacing tips I’d love to hear them in the comments.

      %d bloggers like this: