Tag: Lupus

Depression and time out

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With Alex Cunningham, Debbie Abrahams and my good friend Gail Ward at the Disability Equality Roadshow a couple of years ago. 

I don’t often talk about myself in my posts. I write about government policies, their socioeconomic consequences, their often devastating impacts on fellow citizens and critical, evidenced exploration of the ideological narratives that underpin them. In particular I write about welfare policies.  

I began campaigning and writing critically about the implications of the Coalition’s controversial Welfare Reform Bill in 2012, prior to it passing into law. It was clear that poor, unemployed and disabled citizens were being politically targeted with cuts of unprecedented intensity to their lifeline income. Social security was calculated originally to provide for essentials only. The cuts, strict conditionality, work fare and sanctions have left many citizens without enough money to cover basic survival needs such as food, fuel and shelter.

I messaged every single peer in 2012 to tell them why the welfare reform bil must not happen, and although many agreed, Cameron pushed this controversial bill through parliament, using the ‘financial privilege of the Commons to override criticism and challenge.

The punitive, regressive welfare reforms transformed social security from being a publicly funded social safety net into a ‘hostile environment’ concerned with administrating work discipline. It struck me that the policy details are very authoritarian and reflect certain traditional Conservative prejudices concerning the characteristics of the poorest citizens. These prejudices have been embodied in extremely discriminatory and oppressive policies. 

These coercive policies are offensive to basic ethical principles, undermine democracy and the fundamental universality of basic human rights, by making them conditional for the poorest citizens with the greatest need for protection from political abuse. Austerity was an ideological choice among several more humane ones. Austerity is a central feature of neoliberalism.

Having gone through the controversial Work Capability Assessment in 2011, when I had to give up my social work because I was too ill to continue in my post, followed by the distressing appeal process, some of my first pieces of work were aimed at providing support for other people going through the same process. I used information that an Atos whistleblower provided to help others navigate the fundamentally unfair assessment for Employment and Support Allowance (ESA), which is based on a biased process, weighted specifically towards finding justification for ending a claim for support and finding disabled or ill people ‘fit for work’.  

My own experience of the Work Capability Assessment was so terrible that I couldn’t face claiming PIP for 6 years. I finally did last year, with support from my local council, who had also provided some adaptations and aids in my home because of the growing extent of my disability. The experience of the PIP assessment was as terrible as I had anticipated.

I also co-run a group on Facebook to support other people going through ESA and PIP claims, assessments, mandatory reviews and appeals. Many of the people we support are experiencing profound psychological distress, anxiety and so many are having suicidal thoughts. Lots of people contact us for psychological and emotional support, and sometimes it feels very overwhelming to see such widescale and profound distress and harm that people are experiencing because of cruel government policies.

Many concerns have been raised regarding the reliability of the assessment in practice, the harmful effects of wrong decisions on vulnerable citizens and even its value-for-money. I submitted evidence to a United Nations’ inquiry from 2012 onwards, which concluded in 2016 that the government’s welfare policies have systematically violated the human rights of disabled people.  

My main aim is to share information, evidence, analysis and insight and to raise awareness of the unjust impacts of neoliberal welfare policies as widely as possible with citizens, politicians, professionals, academics and allied organisations. This has included speaking at conferences about the consequences of neoliberalism and the welfare reforms, meeting regularly with opposition welfare ministers (Conservative ministers have consistently refused to engage); contributing to the design of opposition welfare policies where I can, in addition to writing blogs.  

I’ve been asked a few times to do interviews on TV, and I try to get out to protests but often I’m simply not well enough to do so. My illness – lupus – affects all of my joints, tendons, periodically causing inflammation and pain, affecting my mobility. It also affects my nerves, blood cells, lungs, brain, my gut and my ability to fight infection. I catch a cold and end up with pneumonia.

I often have low platelet counts – autoimmune thrombocytopenia, which is a bleeding disorder. That seriously limits what I can do, sometimes. I’ve also developed a sensitivity to flickering lights, which causes partial seizures and other problems. That’s problematic because it restricts where I can go – shopping areas for example, are often a nightmare and my clubbing days are long over. I’ve always been an outgoing person, but over recent years, my increasing physical vulnerability has left me a little agoraphobic, too. But I do my best. I’m a person that seems to prefer working ‘behind the scenes’ – ideas and scripts. I once worked for the BBC many years ago as a script writer. I was given some acting roles for some of the comedy sketches I had written. I hated the acting, but loved the creative side of my work. It’s not that I couldn’t act – apparently I could and kept getting asked to do it – but I don’t like that kind of being on stage thing, it makes me very uncomfortable. 

Another part of my illness is neurological, and that means I have cognitive problems and depression. Lupus can also sometimes lead to psychosis. All of this said, simply being chronicallly and seriously ill can cause depression because of the constant need to adapt to progressive and ever-expanding symptoms.

Over the last 2 weeks I’ve written several particularly nightmarish articles about nightmarish policies, policy proposals and serial acts more generally of a nightmarish and utterly indifferent, unresponsive government. 

I’m currently in utter despair about the state of the UK and the fact that we have an extremely authoritarian government chiseling away at democracy and our fundamental human rights. The writing and the support work I do can sometimes feel relentless and overwhelming, and those of us supporting others don’t have a professional debrief session. We should probably address that and work together supporting each other a little more. But most of us probably seldom get time to stop and think about it.

I’m going to have to take some time out to deal with serious depression and exhaustion. In the meantime, would you please share my articles, because as depressing as they are, people in the UK need to know the way the wind is blowing.

I also want to say thank you for everyone who has supported my work over the past few difficult years, and those who have very frequently shared it. Also, thank you for all of the feedback you have given, which has kept me going.

I will be back as soon as I’m feeling more myself.

Thank you,
Sue x

dis-eq-roadshowGail Ward and me working with Debbie Abrahams and others


Here are my last few articles:

Welfare sanctions are killing people with chronic illnesses such as type 1 diabetes

Why private landlords are calling for ‘major overhaul’ of Universal Credit, many refuse to let properties to ‘high risk’ universal credit claimants

The Centre for Social Justice say Brexit is ‘an opportunity’ to introduce private insurance schemes to replace contribution-based social security

The government’s shameful lack of progress on disability rights in the UK – new report update and submission to the UNCRPD Committee

Concerns about the impact of Brexit on the human rights of disabled people in update report to UNCRPD

Damian Hinds rebuked for misusing statistics and being conservative with the truth

Government plans to use your phone and online data to police your lifestyle and predict ‘threats’ to your health

Government changes to Mental Capacity Act threatens human rights of vulnerable citizens

British Medical Association proposals deemed passive ‘euthanasia by stealth’ for disabled people with degenerative illnesses

Research finds ‘inaccuracies and distortions’ in media coverage of antisemitism and the Labour Party

Meet Liam and Michelle. It’s time to listen to the voices of homeless people about the fatal flaws of Universal Credit

Disability campaigners & organisations meet with Labour ministers to discuss devastating impacts of government’s draconian disability policies

I had a spot on message from my friend Hubert, who sometimes shares his excellet posts on this site.

He says this: “This is the long term outcome of Tory Policies: the systematic destruction of people for no real reason. In the words of Jarvis Cocker, fuck the morals does it make any money. In her blog, Kitty Jones asks for Readers to share her writings. Not just this blog but all of her blogs.

As a Writer and Researcher, Kitty Jones is providing analytical, researched articles that are frequently expose stories a year before the mainstream media. These are articles that outrage and upset and depress because they are not pandering to the egos of narrow partisan interests. They are setting out the truth, the facts, the consequences of policies.

Which is depressing. Because Government Policy for almost a decade has been grinding destruction. The destruction of sharing between people who think about consequences. The destruction of sharing between people who care about others. The destruction of sharing of aspirations, utopias and ideals. The grinding destruction of the society that they do not believe in.

The core of changing that is sharing this. Sharing the ideas and research that can transform the world. Becaust the truth is, Government Policy is to create a hostile environment to everybody who is not “one of us”. Yet, some people, like Kitty Jones manage to carry on doing and researching and writing. Sharing her work is just one way to stop that hostile environment from spreading.

Please go to the blog and read. Then cut and paste the url from the address bar of your browser and share one of Kitty Jones’s articles. Please. Thank you.”

He added “Because you actually are making a difference. So it does look grim, but we still have visions like yours. 🙂

 


I don’t make any money from my work. I write because it’s something I can do. We each do what we can, when we can and in our own way. 

If you like you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to continue to provide support to others. The smallest amount is much appreciated – thank you. 

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PIP assessments are dehumanising, degrading, very distressing and potentially harmful

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I co-run a support group for people going through Employment and Support Allowance (ESA) and Personal Independent Payment assessments and appeals. I have heard many people’s harrowing experiences of these assessments, I have written about them, and I’ve written critically about the assessment process itself. However, it isn’t until you experience one of these assessments for yourself that you may fully appreciate just how utterly distressing, surreal, degrading and dehumanising the process actually is. Or how potentially harmful.

I had my first ever Personal Independence Payment (PIP) assessment today. I have systemic lupus and pulmonary fibrosis, among other problems, all of which affect my mobility and capacity to live independently, day-to-day. My consultant is a rheumatologist and more recently, I have been seeing a pulmonary consultant. Other specialists I sometimes need to see are a neurologists, opthalmologists, physiotherapists and haematologists.

After a bout of pneumonia and sepsis earlier this year, which almost cost me my life, a follow-up scan found further lung problems, which have probably been ongoing for some time. Fibrosis can happen as a result of connective tissue illnesses like lupus, scleroderma or rheumatoid arthritis. It can also happen to people whose conditions have been treated with a chemotherapy called methotrexate – which I was given from 2012 onwards. My mother, who had rheumatoid arthritis, died suddenly of pulmonary fibrosis in 2009. The coroner said it was a complication of her illness, not because of a treatment. She was never given methotrexate.

The interview part of the assessment seemed okay, initially. I provided further evidence regarding my recent assessment, undertaken by my local council’s Occupational Therapy Service, which led to the prescription of aids and appliances in my home. The assessment report was quite clear about my basic medical conditions and day-to-day mobility limitations. I was asked about medication. I explained that following my second appointment with my new rheumatologist, I was prescribed some new medications, including one for secondary Raynaud’s syndrome, which has arisen because of my having lupus, as a complication.

A recent thermal imaging and microvascular study shows that this condition has got worse over time, and so my rheumatologist prescribed a treatment called Amlodipine. It concerned me that the Health Care Professional looked confused and skeptical when she asked for a list of my medication, and she said that this is a treatment for high blood pressure, she seemed to disbelieve what I had told her. I explained that I don’t have high blood pressure, and that calcium channel blockers such as Amlodipine are used for more than one condition, such as certain types of angina – which I also don’t have – and secondary Raynaud’s syndrome, which I do have. 

I was asked about the impact of my illnesses on my day-to-day living. At one point I explained that I find preparing and chopping food difficult because of the tendonitis in both wrists. I have been diagnosed with De Quervian’s Tenosynovitis, which makes putting any weight or strain on my wrists very painful.

I was also concerned that I was then asked if I have had my wrists splinted. This shows a lack of understanding about my condition. I have had splints but it did not make any difference to my wrists. I was diagnosed with De Quervain’s syndrome by my rheumatologist and a physiotherapist in 2011, but had the problem for considerably longer. As my physiotherapist pointed out, my wrists are not injured or strained through overuse and so won’t get better with rest or splinting. This is because they are damaged by a chronic systemic inflammatory disease process that is ongoing, and he told me it is medication rather splinting that is needed to try to manage the level of inflammation in my body as a whole.

Splinting my wrists is akin to putting a plaster cast on a knee affected by rheumatoid arthritis, or a plaster on cancer. It won’t help at all. That the HCP didn’t seem to understand the difference between the chronic inflammatory symptoms of connective tissue disease and curable strain and injury related conditions bothered me.

Another thing that bothered me is that I was asked about the frequency of my periods of severe illness and how that impacts on my ability to manage things like personal care. She wanted an actual number of days, which of course is impossible to give with any precision when you have a fluctuating condition. Sometimes I struggle getting dressed and spend days on end in my pyjamas, and the HCP asked me “how often”? I tried to give an average number of days per month, but because the acute flares of my illness vary so much from month to month, week to week, that was very difficult to do. She also seemed impatient that I struggled to try and work out an average. I have cognitive problems as a result of my illness.

Another problem is that I struggle with washing my hair sometimes, and she demanded to know how often I need assistance with that task. The best I could do was to explain that when I have no help, I can go up to two weeks at a time with matted, unwashed hair. I felt embarrased and ashamed enough in having to discuss these personal difficulties with someone I have never met, but it was made to feel somehow like a confict, that part of the discussion. I felt that if I didn’t provide precise and quantified “evidence”, the qualitative details – my experience of my disability – would not be taken seriously by the HCP. 

Another problem with the assessments that worries me is that there was nowhere near enough time to discuss the complex impact of all my complex medical conditions and wide-ranging symptoms on my day-to-day life.

The ‘examination’

After discussion of my conditions and how my illnesses impact on upon my day-to-day living, I was asked to do some tasks during an examination, which have left me in a huge amount of pain. I also felt stripped of dignity, because I struggled to manage the exercises and felt very anxious and distressed. I was shocked at some of the tasks I was asked to do, and also shocked at the fact I couldn’t actually undertake a number of these tasks. My shock turned to anger later, as I had to leave in significantly more pain that I had arrived with at the start of the appointment. I was also asked to do each of the unfamiliar tasks and exercises in quick succession, which made assessing any likely pain and potential damage difficult before trying to do them.

It is also a traumatic experience to suddenly discover that your illness has insidiously robbed you of a degree of mobility that you previously assumed you had. That is always a shock. 

Last year, my GP was carrying out a standard examination and smear, when my hips locked painfully, as I tried to move my legs. She couldn’t completeher examination and the procedure as my egs would not move. After this, she told me to not get up for a while, and she described the experience – discovering that my mobility had been painfully restricted by my illness – as “traumatic.” It was.

I have, among other problems, very painful inflammatory arthritis and tendonitis in my knees, hips, spine, Achilles’ tendons and ankles. Because the inflammation and damage is bilateral and symmetrical – affecting both knees, both hips, both ankles and both Achilles’ tendons equally, and across my lower spine – it leaves me unable to compensate for pain, stiffness and weakness by shifting my weight and balance onto another limb, as that is also weak, stiff and painful. It leaves me unsteady. I often use a stick to stop me falling over, but as an aid for walking, it’s pretty useless generally, because my shoulders, elbows and wrists also won’t take any of my weight.

The inflammation process causes marked stiffness as well as severe pain, and so restricts my mobility. I was asked to “squat down” at the start of the examination. I refused, and told the assessor that I couldn’t do that. It would have certainly caused me severe pain and possibly an injury. As I can’t support weight on my shoulders and wrists – I also have osteoporosis in my wrists and hands –  had I tried and fallen backwards, I may have easily ended up with a fractured bone. I was horrified at being asked to do that. I struggled to equate the “health care professional” with what I had been asked to do, and felt confused and shocked that she had asked me to do something that may have been harmful.

I also felt that the HCP may have misconstrued my comments that I couldn’t undertake this task as an unwillingness to cooperate, as she looked unhappy about it. She did ask why, and I explained. I felt that trying some of the other tasks she set, which looked to be less dangerous, would at least demonstrate that I wasn’t being uncooperative, and most looked like they wouldn’t inflict any damage at first glance, when she demonstrated them.

However, other exercises I tried to do resulted in my neck locking and severe pain when I was told to turn my head to look over my shoulder – and couldn’t. I have neck problems through longstanding inflammation there and an upper spine injury involving a displaced vertebrae, which is sometimes very painful. In addition, the problems in my shoulders also contributed significantly to the level of pain when I turned my neck, and my neck clicked painfully at the base of my skull. 

I was asked to put my hands and wrists in positions that looked impossible to me. I tried, though. I was asked to line the backs of my wrists up with my hands flat, which I couldn’t do, and it hurt me a lot to try this.

Phalens-maneuver
This is called Phalen’s Manoeuvre. I was asked to do what is actually a provocative diagnostic test for carpal tunnel syndrome – which entails compression of the median nerve. The test provokes the symptoms of carpal tunnel problems, in the same way that the painful Finkelstein test provokes symptoms of severe pain in people with De Quervain’s. I have never been diagnosed with carpal tunnel problems, but I do have more than one diagnosis of bilateral De Quervian’s Tenosynovitis, as stated previously.

I tried to do this manoeuvre, even though it isn’t applicable to my condition (though I didn’t know that at the time, I have since researched the test, as I wanted to know why I couldn’t perform it). I couldn’t even get close to managing it, it hurt my shoulders a lot when I tried to align my elbows at right angles with my dropped finger tips, and I couldn’t drop my wrists fully due to an incredible pain and stiffness that I had not expected. The backs of my wrists simply painfully refused to meet.

I do struggle with pain when putting any weight on my wrists, but didn’t realise how much they had stiffened up, restricting their movement. Not being able to perform this movement doesn’t mean I actually have carpal tunnel syndrome. Nonetheless, I feel that given my previous concrete diagnosis, I was put through this painful and traumatic series of medical tests for no good reason. 

This is the problem with a short assessment of complex conditions. Many of my problems and diagnoses go back years, and only some of them are summarised neatly on my consultant’s report. My relationship with my new rheumatologist started in April, my old one moved in 2015. My new rheumatologist decided to “challenge” the previous diagnoses of two former rheumatologists. Her report to my GP was woefully inaccurate because she had not read my notes or listened to what I told herLong story short, she re-diagnosed me, inaccurately, with fibromyalgia, she didn’t read my notes, she sent me for tests and scans I had already had previously, whilst suspending my treatment pending results. The scans and tests took months. That resulted in a serious lupus flare, which culminated in a bout of pneumonia and sepsis. During the time I was in hospital, I was re-diagnosed with lupus following abnormal test results. My having lupus is thought to be the key reason why I had got so ill – unfortunately, lupus leaves me very susceptible to serious infections like pneumonia, kidney infections and sepsis. I now have a new rheumatologist who says I definitely have lupus.

Atos say they won’t carry out ‘diagnostic tests’ but they did.

In the appointment letter from Atos, it says: “The Health Professional will talk to you about how your health condition affects your daily life”. Much of this was covered with the council’s initial care plan report, but I did discuss my health issues and barriers to independence at length during the assessment.

The letter from Atos then says: “This will not be a full physical examination or an attempt to diagnose your symptoms.” 

My neck and shoulders are stiff, painful and I currently have limited mobility in them, yet I was asked to put my hands behind my head, raise my arms and so on. Loud joint cracking, popping, creaking and gasps of pain and my screwed up face didn’t stop the demands of what I felt was the impossible. I was actually sweating and trembling with the effort and pain, and still she did not stop the “examination”. I felt I couldn’t say no, as I would have seemed somehow unreasonable. I kept thinking that if I tried, gently, I was at least showing willing, and that would be okay, but unfortunately I wasn’t. 

It’s difficult to equate these artificial manoeuvres with day-to-day activities, and therefore it is also difficult recognise the impact it would have on my mobility limits before I tried them and to gauge how much a movement in isolation is going to hurt. 

Immediately following the examination/tests, my left calf has inexplicably swollen to twice its normal size, I could feel the uncomfortable tightness in it, and the swelling was visible through my jeans, whilst still with the assessor, and I commented on it.

My pain level has significantly increased everywhere. I had no groin or neck or elbow pain when I arrived until I was asked to do activities that were beyond my capability and that caused me a good deal of needless pain. I felt undignified trying to do those tasks, shocked and dazed at the pain, and sometimes, at how limited my movements have become. It was an extremely distressing and dehumanising experience. I was also shocked at how the effort made me tremble and sweat, and at how my clear distress was completely ignored by a so-called “health care professional”.

Of course I am going to make a formal complaint about this. It shouldn’t cause people so much pain and distress to be assessed for support. And any examination part of the assessment ought to take your medical conditions and descriptions of mobility constraints fully into consideration without such a grueling and painful examination regime.

It is worth bearing in mind that in addition to my own account, medical evidence from my rheumatologist was submitted in advance, and a report of recent assessments by a council occupational therapist who prescribed aids and adaptations, which clearly outlined my mobility difficulties, following two assessments, was also submitted. This was a report written by a qualified professional and was based on her own examination of my level of functionality and mobility while I tried to perform directed tasks in my home, such as climbing stairs, preparing food and using a bath board in my bathroom.

The fundamental difference between the assessments is that the one for my care plan allowed me to undertake tasks at my own pace, with dignity, and the Atos assessment did not. The former also felt like it was a genuine assessment of my needs, with support being the aim, whereas the latter felt like some sort of skeptic’s test to see if a way could be found to claim my account and those of my doctors were somehow incorrect. The Atos assessment was so horrifying because it felt like it was about reluctantly providing support for maintaining my independence as a very last resort only. 

According to the government’s PIP handbook, for a descriptor to apply to a claimant they must be able to reliably complete an activity as described in the descriptor. Reliably means whether they can do so:

 safely – in a manner unlikely to cause harm to themselves or to another person, either during or after completion of the activity.

The descriptors at no point demand that a person completes the Phalen manoeuvre or squats. The brief and painful completion of raising your hands above your head does not demonstrate either a fluctuating ability to do so, or your ability to hold your arms up long enough to, say, wash your hair and rinse it, even on a good day. Nor does it adequately account for severe pain, profound fatigue, coordination difficulty and breathlessness that often impact on any performance of that task. I did point this out, and the fact that the activities had left me in a lot of pain.

It’s now the day after my PIP assessment. I am still in a lot of pain with my joints and tendons. I feel ill, anxious, depressed and I am still shocked and angry. I can’t even manage to wash today. I have also developed pain on the left side of my chest, which feels rather like pleuritis. I feel really unwell, profoundly tired and haven’t felt this bad since my bout of pneumonia. The assessment hasn’t made me ill – I was already seriously ill. But it HAS exacerbated by symptoms. 

No-one should be made to feel worse because of an assessment for support. The activities I was asked to do should have been stopped when it became clear I was struggling. I stated I was in pain, I was visibly sweating, trembling, weak and clearly in a lot of pain with the effort, and as a “health professional”, the assessor should have halted that examination. I am very concerned that unintended harm may be caused by assessors conducting examinations because they do not have qualification, sufficient information or understanding about patients’ conditions.

My condition, for example, has left a trail of individual symptom diagnoses and medical data that goes back many years. With such a complex array of joint and tendon problems, I felt that there was absolutely no consideration of the impact that, say, a hand and wrist manoeuvre may have on a person’s damaged shoulders and elbows, as well as their wrists, or how a neck movement may impact on an upper spine injury and inflammatory shoulder problems, as well as the neck.

Given the assessment report I submitted and medical evidence, in addition to my own account, I feel that such a painful physical examination ought to be restricted to cases of absolute necessity. I don’t believe those simple isolated movements I was asked to do can possibly demonstrate he complex limitations on my day-to-day independence, and how I manage (or don’t) to cope with domestic tasks and general mobility.

The fact I couldn’t do some of them was both traumatising and humiliating, as well as very painful. I am still in a lot of pain as a result. 

The shame of being there to explain to a stranger about your illnesses, the intimate details of your life, your vulnerabilities and why you need help, is difficult enough, without the added distress of being coldly assessed by someone who doesn’t understand your conditions and does not care that what they ask you to do may be traumatising, painful and potentially very damaging.

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Related

What you need to know about Atos assessments

Government guidelines for PIP assessment: a political redefinition of the word ‘objective’ 

Government subverts judicial process and abandons promise on mental health ‘parity of esteem’ to strip people of PIP entitlement

Tory MP says PIP should only go to ‘really disabled’ people, not those with anxiety ‘taking pills 

Disabled mum took fatal overdose after she was refused PIP

Fear of losing disability support led a vulnerable man to a horrific suicide

Theresa May euphemizes savage cuts to PIP when confronted by an angry disabled person demanding democratic accountability


 

I don’t make any money from my work. But you can support Politics and Insights and contribute by making a donation which will help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated, and helps to keep my articles free and accessible to all – thank you.

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Tory MP says PIP should only go to ‘really disabled’ people, not those with anxiety ‘taking pills at home’

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George Freeman, MP for Norfolk and chair of the Prime Minister’s Policy Board, has defended the government’s decision to subvert the judicial system, by disregarding the rulings of two independent tribunals concerning Personal Independence Payment (PIP) for disabled people.

In an interview on Pienaar’s Politics, on BBC 5 Live, Freeman said: 

“These tweaks [new regulations to cut PIP eligibility] are actually about rolling back some bizarre decisions by tribunals that now mean benefits are being given to people who are taking pills at home, who suffer from anxiety”.

He claimed that the “bizarre” upper tribunal rulings meant that “claimants with psychological problems, who are unable to travel without help, should be treated in a similar way to those who are blind.”

He said: “We want to make sure we get the money to the really disabled people who need it.”

He added that both he and the Prime Minister “totally” understood anxiety, and went on to say: “We’ve set out in the mental health strategy how seriously we take it.” 

He said: “Personal Independence Payments reforms were needed to roll back the bizarre decisions of tribunals.” 

Freeman’s controversial comments about people with anxiety “at home taking pills” implies that those with mental health problems are faking their disability. He trivialises the often wide-ranging disabling consequences of mental ill health, and clearly implies that he regards mental illnesses as somehow not “real” disabilities.

His comments contradict the government’s pledge to ensure that mental health and physical health are given a parity of esteem, just months after the Prime Minister pledged to take action to tackle the stigma around mental health problems. 

Yet people with the following mental health conditions are likely to be affected by the reversal of the Independent Tribunal’s ruling on PIP mobility awards – those in particular who suffer “overwhelming psychological distress” when travelling alone:

Mood disorders – Other / type not known, Psychotic disorders – Other / type not known, Schizophrenia, Schizoaffective disorder, Phobia – Social Panic disorder, Learning disability – Other / type not known, Generalized anxiety disorder, Agoraphobia, Alcohol misuse, Anxiety and depressive disorders – mixed Anxiety disorders – Other / type not known, Autism, Bipolar affective disorder (Hypomania / Mania), Cognitive disorder due to stroke, Cognitive disorders – Other / type not known, Dementia, Depressive disorder, Drug misuse, Stress reaction disorders – Other / type not known, Post-traumatic stress disorder (PTSD), Phobia – Specific Personality disorder, Obsessive compulsive disorder (OCD).

Note that some of the listed conditions have known physiological causes, too, such as “Cognitive disorder due to stroke”, whereas Agoraphobia, “Stress reaction disorders”, PTDS, some anxiety and depressive disorders, substance use and PTDS, for example, most often arise because of context, circumstances, events and  experiences, whilst the aetiology of some of the other listed conditions is not yet clearly understood by medical experts.

Regardless of the cause of an illness, it is not possible or appropriate to use constructed and arbitrary taxonomies and hierarchical ranks of disability to decide in advance of an assessment how those conditions negatively impact on disabled people’s capacity to live their lives, to perform tasks, their dignity, social inclusion and independence. Freeman’s generalisation was therefore completely inappropriate.

Freeman’s comments signposted the Conservative’s “deserving” and “undeserving” narrative, implying that some disabled people are faking their illnesses. However, disabled people do not “cheat” the social security system: the system has been redesigned by the government to cheat disabled people.

Criticism

Despite some scathing comments and challenges from the opposition, Freeman maintains: “My point was that these PIP reforms are partly about rolling back some frankly bizarre decisions in tribunals which have seen money that should go to the most disabled spent on people with really much less urgent conditions.”

The chief executive of Scope, Mark Atkinson. said: “It is unhelpful to make crude distinctions between those with physical impairments and mental health issues because the kind of impairment someone has is not a good indicator of the costs they will face.

Many disabled people will be now be anxiously waiting to hear as to whether or not these tighter rules will affect their current PIP award.

The government must offer clarity and reassurance that these new measures will not negatively affect the financial support that disabled people receive now or in the future, and that they stand by their commitment to making no further changes to disability benefits in this Parliament.”

Debbie Abrahams MP, Shadow Work and Pensions Secretary has also responded to the comments by Freeman. She said:

“Mr Freeman must immediately apologise for the comments he made regarding sick and disabled people.

Freeman dismissed the needs of people with mental health conditions saying support should go to “really disabled people” rather than those who are “taking pills at home, who suffer from anxiety.

Not only does this fly in the face of the commitment to ‘parity of esteem’ for people with mental health conditions, but it directly contradicts Theresa May’s comments on mental health and two recent tribunal judgements.”

The Shadow Chancellor, John McDonnell, has called on Philip Hammond not to go ahead with the £3.7bn worth of cuts to PIP which will hit 160,000 disabled people.

The announcement about the two controversial regulations to be imposed without any parliamentary scrutiny and debate, and without any democratic dialogue with disabled people, was sneaked out last week by the government. It will mean 160,000 disabled people are likely to see a loss in their income as a direct effect of the changes made by the government to how PIP is awarded.

 McDonnell said

“Theresa May has used the cover of the by-elections to sneak out this announcement hurting so many vulnerable disabled people.

His is a return to the worst politics of spin that so tarnished our politics for so long. It is an act of immense bad faith. She is degrading politics and demeaning the role of Prime Minister.

Next week the Tories will make out that the economy and the public finances are doing better, however, they are planning to go ahead with a £3.7 billion cut to the disabled.

This time last year when the economy and public finances were not doing as well, and the then Chancellor George Osborne tried to cut PIP, Labour stopped him. And in his u-turn he claimed that he could “absorb” the cost of reversing this cut.

Hammond can’t hide from these PIP cuts in his Budget. He needs to explain why he can’t absorb them like his predecessor while he is still going ahead with tax giveaways to the very wealthiest in our country.”

But cutting PIP may cost more than it will save. 

PIP is an in-work benefit as well as being accessible to disabled people out of work. Cutting PIP will invariably mean that some disabled people can no longer remain sufficiently independent to work. Many have lost their higher mobility rate component when they were reassessed for PIP after claiming Disability Living Allowance (DLA), and as a consequence, have lost their motability vehicles – which includes wheelchairs as well as specially adapted cars –  leaving many completely housebound and unable to work. 

The Conservative claim that “the government is committed to supporting the most vulnerable” doesn’t stand up to scrutiny, given the Conservative’s policy record, including cruelly scrapping the Independent Living Fund, which has had a hugely negative impact on those trying their best to lead independent and dignified lives, and the Access To Work funding has been severely cut, this is also a fund that helps people and employers to cover the extra living costs arising due to disabilities that might present barriers to work.

The mental-physical illness distinction is a false dichotomy

It’s not appropriate to dichotomise mental and physical illness, as they are not clearly distinct. Most people would probably recognise that trauma, anxiety and stress can exacerbate illnesses that have a clear physiological basis. However, illnesses that have clearly defined “physical” symptoms can often also cause mental illness. Depression resulting from dealing with chronic pain and adapting to progressive illness and increasing disability is one example of the overlap between the physical and mental dimensions of illness.

I have lupus, which is an autoimmune illness that potentially progressively damages the joints, tendons, muscles, nerves, skin, eyes, blood cells, capacity to fight infections, heart, lungs, kidneys, stomach and liver. And the brain.

Most people with lupus complain of severe headaches, cognitive dysfunction, short-term memory loss and often, coordination difficulties. However, some suffer from depression and anxiety as a direct consequence of inflammatory changes in the brain, and some people also experience mood disorders.  Other forms of neuropsychiatric lupus include psychosis, seizures, stroke and vascular dementia, chorea and cerebrovascular disease. There is often no clear boundary between the mental and physical symptoms of illness.

Health and wellbeing have socioeconomic determinants

Another important consideration is the context in which people live, this also has a significant impact on health and wellbeing. There is an extremely unequal distribution of power and wealth in the UK. There are also corresponding unequal distributions of opportunity, health and psychological wellbeing, inclusion, human rights and citizen freedoms more generally, such as freedom of choice and participation in democracy.

Precarity and anxiety directed by the state through targeted and discriminatory policies at the poorest citizens mediates and maintains a repressive state–citizen power relationship.

There is also an emerging and clear “cognitive” hierarchy: those in positions of power are formulating policies that are premised on a fundamental assumption that poverty happens because of something that poor people don’t do, or that they do “wrong”, and this happens because of cognitive errors and  “wrong” behaviours and attitudes. The assumption, of course, is that the policy decision-makers are more cognitively and behaviourally competent than those they are “nudging” to change their thinking and behaviour.

However, we know that an economic system founded on mythical “market forces, an even more mythical meritocracy – amongst other just-world fallacies – and competitive individualism, which sets citizen groups fighting for increasingly scarce resources, creates just a few “winners”(around 1%) and many more who are dispossessed (99%). 

Policies controversially aimed at “correcting behaviours” are increasingly punitive (benefit sanctions, increased welfare conditionality generally and restrictions on child tax credits are examples of the government’s behaviourist approach) that draw on psychosocial dynamics – imported from techniques of persuasion at the low end of the advertising industry – build and reproduce socioeconomic hierarchies, not only materially, but through dominant discursive practices, and also through inflicting precarity and perpetual anxiety on those people who have the least share of national wealth. 

It’s remarkable that a government that claims “work is beneficial to health” also fail to recognise the impact of neoliberal socioeconomic organisation, prejudiced political narratives and draconian policies, the relationship between growing inequality and increasing poverty, and how this toxic context has a detrimental effect on people’s physical health and psychological wellbeing.

The Conservatives are so busy diverting public attention, and pointing out what they think those people who need mitigation from the worst ravages of neoliberalism are “doing wrong”, they fail to recognise and acknowledge what it is that the government is doing wrong.

When people are attacked, oppressed and controlled psychologically by a so-called democratic government that embeds punishment at the heart of public policies to target the poorest citizens, it’s hardly surprising they become increasingly ill.

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I wrote a longer article about this for Scisco Media, which can be read here: Social security has been redesigned to cheat disabled people

 


 

I don’t make any money from my work. I am disabled because of illness and often struggle as have a very limited income. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.

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The biggest barrier that disabled people face is a prejudiced government

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The very act of renaming incapacity benefit support for sick and disabled people “employment and support allowance” signaled the political intent to make that support precarious, with an aim of pushing people previously exempted from work on medical grounds from lifeline social security protection into work on political grounds, regardless of the consequences. The word “allowance” means the amount of something that is permitted, especially within a set of regulations or for a specified purpose. This language shift signaled the increasing contingency of support for disabled people.

It also reduced and transformed the sick role, making it increasingly transitory, redefining chronic, incurable conditions as somehow transient, and marking a shift from medical definitions of sickness and disability to psychopolitical redefinitions, which are ultimately aimed at pushing forward a small state neoliberalist agenda. Welfare provision is being steadily dismantled. 

However, changing the name and making the eligibility criteria for support much more stringent has not helped sick and disabled people into work. It has simply created circumstances of further disadvantage, hardship and distress for many people.

It hasn’t worked because many of those people affected by the nudge-styled rebranding of their lifeline support and draconian cuts to “incentivise” people to take up and cherish the Puritan work ethic, as the paternalistic Conservatives think we ought to, are simply too ill to work.

Of those that may be able to work, over time, their would-be employers have not engaged with legal requirements and provided adjustments in the workplace to support those disabled people seeking employment. The government have removed the Independent Living Fund, and reduced Access to Work support, Personal Independence Payment (PIP) is very difficult to access because of the stringent eligibility criteria, whilst the disability benefit Employment and Support Allowance was also redesigned to be increasingly difficult to qualify for.

But political word games, and intentions to attempt to shrink the categories of what is deemed “illness and disability” along with the ever-shrinking state, don’t cure illness and disability, and it’s offensive to witness a very wealthy first world so-called democratic government viciously hounding and shamefully coercing a group of people, negatively labeling them as a “burden on the taxpayer”, and forcing them to take any low paid, insecure work, without any support whatsoever, despite the fact their doctor and the state, via the work capability assessment, have deemed them already to be unfit for work, whilst at the same time leaving this group on an isolated, ever-shrinking island with ever-decreasing lifeline support.

Perhaps PIP ought to include invisible bootstraps in the aids and appliances categories.

This is juxtaposed with the recent gifted tax cuts for the wealthiest, indicating clearly that Conservatives perceive and construct social hierarchies with policies that extend inequality and discrimination. The axiom of our international human rights is that we each have equal worth. Conservative ideology is fundamentally  incompatable with the UK government’s Human Rights obligations and with Equality law. The chancellor clearly regards public funds for providing essential lifeline support for disabled people as expendable and better appropriated for adding to the disposable income for the wealthy.

Most people (over three-quarters ) who are disabled became so during their working life. There is an implicit political prejudice regarding disability, evident in policy-making, which is that it is an undesirable state and somehow preventable. There is another more explicitly stated prejudice, which relates to the oversimplistic false dichotomy of society. Citizens have been redefined as taxpayers or economic free-riders. However, not only have most disabled people worked and contributed tax and national insurance, people claiming social security also contribute significantly to the Treasury, because we pay VAT, council tax, bedroom tax and a variety of other stealth taxes.

The state confines its focus and responsibility mainly at re-connecting disabled people with the labor market, without any consideration of potential health and safety risks in the workplace, as a strategy of “support,” and justifies the draconian cuts to support as providing “incentives” for people to work, by constructing a narrative that rests on the bogus and socially divisive taxpayer/free-rider dichotomy:

 “You answer if a disabled person can’t work there is NO cut but if they can but won’t, why should taxpayers subsidise them & trolls go mad!”

 By “trolls” Michael Fabricant actually means disabled people and campaigners responding to his tweet.

What happens to those people that can’t work or cannot find an understanding employer, prepared to make reasonable adjustments in the workplace?

On becoming ill – it can happen to anyone

I am medically ill and my illness (lupus) affects my mobility, focus and general wellbeing. I am restricted in what I can do, and the symptoms and exacerbations are very unpredicable. However, it is economic, political and cultural forces which have created and continue to create my ongoing disability and social marginalisation, not my illness. Many of my problems are compounded because of an unadapted physical environment, a lack of resources and the attitudes of others, particularly the current government’s.

I don’t accept that health problems ought to be seen as the cause of the socioeconomic deprivation and exclusion that many of us are experiencing, because the real cause is entirely political. Policies, which exclude disabled people from their design and rationale, have extended and perpetuated institutional and cultural discrimination against disabled people.

My own illness arose partly because of a genetic predisposition, partly because of my gender and hormonal events which often trigger the illness, and probably a variety of other complex reasons, none of which specialists fully understand yet. Prior to becoming very ill, I led a very active and healthy life. I worked hard in a job I loved. My diet is and always has been balanced and healthy, I enjoyed outdoor activities such as climbing, abseiling, archery and walking. I was never inactive or overweight, and I am not stupid when it comes to health issues. Lupus isn’t a “lifestyle choice” and it didn’t arise because of something I did wrong.

All the same, I frequently get well-meaning but bad advice to try different diets, “natural” herbal remedies (people forget that they contain chemicals) – usually the immune- enhancing ones like echinacea, which my rheumatologist has already advised could be very dangerous – and the best one of all: “You should stop taking the heavy duty medication and ‘cleanse your system’.” That would be medication that I take to keep me alive because I tried and ran out of all the other options. I usually recommend a simple course of water melons for such “experts”, to be taken at four hourly intervals, rectally.

Like many other ill and disabled people, I have worked for most of my life. My work was rewarding, and the professional roles I took up have entailed developing inspirational ways to support and enable others, from voluntary work with Women’s Aid and Victim Support, to salaried youth and community work, social work, mental health work and delivering training. I worked whilst being ill for a number of years.

By 2010, I simply couldn’t work any more. My previous and mostly background joint, nerve and muscle pain suddenly became all consuming. My ankles, knees, wrists and fingers swelled. I caught a cold at work which turned to pneumonia on two occasions in 2009. I had apparently random finger abcesses, inexplicable kidney infections, and bruised every time I was touched. I had severe nerve pain in my face and optic nerves, which affects my vision. My hips and lower spine became stiff and painful, my shoulders became frozen. I had a painful rash across my face that looked like eczema, only it wasn’t. I was profoundly tired all of the time, and weighed less than eight stones. My GP ran some tests and everything came back lupus, with complications such as a severe autoimmune bleeding disorder, very low immunity to infection and neurological involvement.

Working put my safety, health and wellbeing at substantial risk. It also potentially exposed other people to risk, too, because of the impact of my illness on my judgments, reliability and consistency, eyesight, ability to supervise, mobility and so on. A tribunal agreed with this assessment in 2012.

It was a very painful recognition that I could no longer work, my decision to leave was very difficult, compounded by a sense of loss of self worth and meaning. I felt that my experience, developed skills, not to mention time and effort invested in studying for a highly vocational Master’s degree, were meaningless and unavailing. However, I was completely unprepared for the damaging impact of the political othering and socioeconomic outgrouping that followed from 2010.

And the poverty. I came to feel that I had been politically redefined as somehow “deviant” by 2012. A much needed transformation to add to the grieving process for the person I was before my body became a traitor. Cheers, Mr Cameron, for the milk of human blindness. The Sex Pistols got it a bit wrong back in the last days of counter-culture and agitprop: it’s not just anarchy that we need for the UK, it’s a modicum of empathy, too.

Doctors and rehabilitation professionals continually recommend medical treatments and practices even though they know that these will not necessarily improve my quality of life. Most of the treatments for autoimmune illnesses such as lupus are largely experimental: comprised of chemotherapies and immune suppressants that carry their own life-threatening risks, and being ill with lupus and other autoimmune illnesses presents a constant and difficult process of weighing up of such risks – life threats from the illness versus life threats and serious life-changing risks from the treatments. 

The dangers that arise when everyone thinks they are an expert on illness and disability

That didn’t stop a job advisor, during my time in the employment support allowance work-related activity, group telling me I should take the chemotherapy methotrexate because her friend with rheumatoid arthritis had some benefit from it. Methotrextate helps around 25% of people taking it, to various degrees, but it cannot cure the illness. Side-effects include sudden death, blindness, liver, kidney and heart failure, lung fibrosis, thrombocytopenia – a serious bleeding disorder which I already have – and death from an overwhelming infection, which I am already susceptible to, since my immune system is easily compromised and broken, amongst many other problems.

As it happens, I had already tried methotrexate for many months, administered by injection into my stomach. It didn’t work and the side-effects were truly diabolical, adding to my existing misery and multiplying symptoms. Another treatment, considered far less risky, called hydroxychloroquine, damaged my retina because I was prescribed too high a dosage, I’m now partially sighted.

However, the unqualified advice from a job coach overlooked that I have a different illness than her friend, and that methotrexate is a black box drug with life-threatening side-effects. Everyone seems to think they are a medical expert nowadays, and that’s the government’s doing, since they have been redefining illness and disability, making it a moral and public matter rather than a private, medical issue. Such political negative role-modelling has permitted a rise in expressions of social prejudice towards disabled people, which is why hate crime has risen significantly since 2010 and is now at the highest level since records began.  

We are either deserving or non-deserving, abled or disabled, never just ill or physically disadvantaged. Our lives have somehow become public property, with all manner of unqualified people feeling entitled to intrude at an intimate level to tell us how to “manage” our illness better. Or to transform media tropes and political folk devils into forms of justification for abuse.

Job centre staff it seems will recommend anything, including unqualified advice about medical treatments, regardless of the risks that may be involved, to coerce people from what was once a social safety net and into any job, regardless of its appropriateness, quality, pay, security, and importantly, it’s potential impact on people’s health and safety.

Last October, I flagged up the extremely worrying government plans to place job coaches in GP practices, with provision made for job centre staff to “update” people’s medical files. The government hadn’t announced this  “intervention” in the lives of disabled people, nor had we been consulted or involved in its design. I found out about it quite by chance because I read Matthew Hancock’s recent conference speech: The Future of Public Services.

I researched a little further and found an article in Pulse which confirmed Hancock’s comments: GP practices to provide advice on job seeking in new pilot scheme.

The government plans to merge health and employment services, and are now attempting to redefine work as a clinical outcome. Unemployment has been stigmatised and politically redefined as a psychological disorder, and the government claims somewhat incoherently that the “cure” for unemployment due to illness and disability, and sickness absence from work, is work.

This is why I visit my doctor and not David Cameron or George Osborne when I need advice, support and treatment related to my medical (and not political) condition.

It’s a prejudiced government that has edited the script regarding sick roles – we no longer have medical sick notes, they have been replaced by political fit notes. The subtext is that we must participate in the world of mainstream work without any choices, without reasonable adaptations and without support. Without any acknowledgement of illness and disability, in fact. Or, we have to accept being redefined, our identity rewritten as “dependent”, “impaired” “unfit for work” as a trade-off for a degree of meagre support.

All of our previous achievements and contributions are forgotten. We once celebrated the achievements of disabled people, but now, we cannot, because disabled people are systematically repressed. We are politically defined as either fit for work (and thus not seen as “disabled”) or not. There are no other options for us, unless we happen to be very wealthy as well as ill.

Singing the body politic in our own voices

We don’t fit with neoliberal dogma and the Tory ideals of “individual responsibility”, competition, a “small state” and compulsory (low) paid employment to enhance profits for the elite’s old boys network. Any positive association with impairment, such as reasonable allowances made or degrees of freedom from the Tory notion of “social obligations” and “responsibilities,” is prohibited. We are faced with an overly simplistic, terribly reductive and dehumanising either/or choice.

We are deemed either fit for work, or too disabled to work, with no accommodation made for what we may be able to contribute in myriad ways to society, nor is our past accumulative experience and skill regarded as a valuable. The moment there is a hint we may have some kind of tenuous work-related capability, all support is withdrawn. However, once we are deemed unfit for work, we are denied full citizen’s status and economic inclusion.

This narrow political approach does nothing to enable and support people, nor does it reflect human diversity. It simply disables us further and denies us autonomy and the right to define ourselves. It’s an approach that actually punishes people for the abilities, experience and skills that they have, stifling human potential. The moment those abilities and skills are revealed at a work capability assessment, all support is withdrawn and those qualities remain unfulfilled. Instead of investing in personal development and extending opportunities, the government is simply cutting social security and public service costs at our expense. It’s not actually their money to cut.

We are expected to participate in an unaccommodating and increasingly competitive job market or suffer the dehumanising consequences and impoverishment of claiming social security long-term. And the people profiting from this are the competing, vulture capitalist private “service” providers.

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There is no support for creating circumstances where our skills may be transfered. There is no support to help anyone adapt their skills and experience to fit future employment. Access to higher education has been restricted because of the steep rise in cost, especially for mature and disabled students. There is nothing in place to ensure that employers recognise disabled people’s skills and experiences and make adaptations to accommodate people wanting to work, and no safety net at all to encourage personal development for disabled people, since all support is tied to rigid definitions of disability. You can either work or not.

Under the guise of lifting burdens on business, this government has imposed burdens on those with disabilities by removing the “reasonable adjustments” that make living our lives possible and allow us some dignity. The labor market is hostile and unaccommodating, providing business opportunities for making profit, but increasingly, the needs and rights of the workforce are being politically sidelined. This will invariably reduce opportunities for people to participate in the labor market because of its increasingly limiting terms and conditions.

This highlights the paramount importance of shifting the political focus to the pressing need to change a disabling culture and to actually listen to our lived experiences, including us in policy design from that of merely coercing us into fitting reductive Conservative definitions to accommodate and fit in with a neoliberal model of society.

We have smug, wealthy and healthy Conservatives redefining disablity, our identity is ascribed by others who have handed us a socially devalued status: we are being told who we are and how we must be.

Citizen’s “needs” are being aligned with politically defined neoliberal outcomes. Those most acutely aware of this are those politically assigned a lower status in the increasingly steep socioeconomic hierarchy. Stigma and othering is used politically to justify the hierarchy and the consequent crass inequalities, which are designed and mediated through policies, not citizens.

Stigma arises because of the perceptions of the oppressor, not those being oppressed. But perhaps it’s time that people who are “working hard” to contribute to the increasingly enclosed economy paused and observed what is going down, because disabled people are not the only ones being stigmatised and radically reduced by a particularly toxic combination of social conservatism and neoliberalism. Punitive and coercive welfare conditionality, including sanctioning, has recently been extended to those in low paid employment and part-time work, as tax credits and additional support vanish under the guise of “universal credit”. The bedroom tax is likely to be extended to the elderly. How does this in any way ensure that “work pays”?  All this will do is increase the precariousness of people’s situations and substantially increase their vulnerability.

The recognition and celebration of human potential, diversity and equal worth has been superceded by an all-pervasive Puritan “hard work” ethic. Our worth is being defined purely in terms of our economic contribution. We are measured out in pounds and pennies whilst making billions for a handful of other people. That is a value that comes exclusively from the dominant paradigm-shaping elite – the ones who actually profit from your hard work.

You don’t.

The government’s new “health and work” programme is actually workfare for sick and disabled people. Apparently, slave labor for big business is good for our “health” and has the added bonus of adding substantially to profits for friends of the Conservatives. It’s amazing how quickly the public have accepted the political semantic shifts, such as “work programme” – compulsory labor for no wage, which was originally about “exploitation” and has now been redefined as “work experience”. Apparently that is also “fair”, “inclusive”, “good” for our health and “makes work pay”.

Makes work pay for whom?

Disability can no longer be considered solely as a medical problem, affecting only a minority of the population. It must be seen for what it is: as a civil rights issue as central to mainstream political discourse. This government uses draconian policies to act UPON disabled people, it does not value our lived experiences nor does it listen and RESPOND to us. It’s a government that simply tells us how we must BE. That is profoundly undemocratic, it discriminates against us and excludes a social group on the basis of a protected characteristic.

There are and have been a lot of ways to define disability, it has variously has been defined through the eugenic model, a medical model, charity model, rights-based model, social model and a radical model. Now it’s time for a disabled people’s model, founded on our lived experiences and varied needs.

Understanding that oppressive situations have not arisen through any fault of our own, and that the oppression is real and has a basis in sociopolitical prejudice and discrimination provides us with the courage needed, and a more solid ground on which to fight for liberation. It always seems to be the case that fighting social injustice is left to the very people who have been excluded and systematically deprived of a political voice and power, it’s always down to us to make others listen. Yet it is invariably the case that when one social group is targeted for political prejudice and discriminatory policies, it affects everyone. Historically we have learned it quickly follows that other groups are singled out, too.

The universal character of human rights is founded on the inherent dignity of all human beings. It is therefore axiomatic that people with medical conditions that lead to disabilities, both mental and physical, have the same human rights as the rest of the human race.

The United Nations is currently investigating this government’s gross and systematic violations of the Convention on the Rights of Persons with Disabilities (CRPD), and a recent report from the House of Lords Select Committee on the Equality Act 2010 and Disability, investigating the Act’s impact on disabled people, has concluded that the Government is failing in its duty of care to disabled people, because it does not enforce the act.

Furthermore, the Select Committee concludes that the government’s red tape challenge is being used as a pretext for removing protections for disabled people. It’s a government that regards the rights and protections of disabled people as a mere bureaucratic inconvenience.

There’s a certain irony regarding the Conservative preoccupation with preserving social order: their rigid ideologically-driven policies create the very things they fear – dissent, insecurity, disorder and the raising of public awareness and recognition of a pressing need for social change and reform. It’s seems to be the case that Conservative governments prompt a growth of social challenges that encourage the flourishing of the very radicalism and revolutionary ideas that they fear and loathe.

That is what happens when people are oppressed.

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Picture courtesy of Robert Livingstone

 

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