Spain: the only option when the DWP and NHS abandon you

This is a story we believe many people are living through, right now.

It is sadly a desperate plea for financial help. But it’s more than that. It’s a statement on the position that the Department for Work and Pensions (DWP) and NHS leave hundreds, possibly thousands, of people across the UK in. This is just one example.

My partner has to go to Spain for life changing surgery. But it costs. The initial amount needed to begin the process is £8,000. 

You can donate via PayPal at http://www.paypal.me/MrTopple

Read below to find out why we’re having to do this.

I wouldn’t wish chronic ill health on anyone. But if people could spend a day in my partner Nicola Jeffery’s body, then maybe the world would be a very different place.

She lives with 16 different illnesses and conditions. You can read more about that here. But sadly the UK’s public health service doesn’t treat many of these. Some of the ones it either doesn’t deal with, or doesn’t treat correctly, are:

I gave up work full time to care for her. Since then, the DWP awarded her just the standard daily living component of Personal Independence Payment (PIP). You can read more about that here. We sent them a Mandatory Reconsideration. It’s been 11 weeks and counting for its decision. My claim for Carer’s Allowance has now been seven weeks, complicated by the fact I am self-employed. Because of the waiting on these we cannot apply for any housing support. We are now in a very dire situation with no seeming way out.

A ‘thank you’

We’ve been fundraising to continue Nic’s ME treatment under the care of the amazing Dr Sarah Myhill.

We raised enough to buy the majority of her ME treatment for six months, so thank you. This cost just over £1,800 in the end.

This is just about it, excluding the £500 worth of antivirals and £400 worth of mycotoxins treatment (because both are prescription only):

MEDS 1

As an example, this is the cost of six months worth of thyroid and adrenal hormone replacements:

MEDS 2

I note some people have said on Twitter ‘why can’t the NHS provide these?’. Firstly, because the NHS repeatedly claimed she had no thyroid issues. This, after proper evaluation, was not the case. Secondly, if it did diagnose it, Nic would be given chemical substitutes, which we do not believe in. The hormone replacements she is on are totally natural (bovine and porcine) – and her blood work has shown they have had the same effect as their chemical counterparts.

We are confident this regime will resolve Nic’s ME. We’re loathed to go into detail until the course is over, but suffice to say the signs so far have been good.

What we can say is that she was living with polycystic ovary syndrome, first diagnosed in 2009. But since starting Dr Myhill’s regime, this has been completely cured. Effectively, the regime for ME has also cured this other illness.

The NHS, meanwhile, says polycystic ovary syndrome “cannot be cured”. We think we know why it has with Nic, and it is absolutely unbelievable when compared to what the NHS offers for those living with it.

Sadly, running parallel to this has been a severe deterioration in her EDS-related CCI and AAI.

‘Rare’, or ‘rarely diagnosed’?

We first discovered Nic was living with these in March. I’d suspected as such, as she was symptomatic of them. So we had a £1,250 upright MRI (not available on the NHS and the only way to properly diagnose the conditions). Then, a Spanish surgeon interpreted the results and confirmed both.

As MEpedia describes, CCI is:

a pathological condition of increased mobility at the craniocervical junction, the area where the skull meets the spine. In CCI the ligamentous connections of the craniocervical junction can be stretched, weakened or ruptured. This can lead to compression of the brain stem, upper spinal cord, or cerebellum and result in myelopathy, neck pain and a range of other symptoms.

 

CCI usually develops as a result of physical trauma such as a car accident, an inflammatory disease such as rheumatoid arthritis or a congenital disorder such as Down’s syndrome. More recently, physicians have reported an increased prevalence of CCI in patients with hereditary disorders of connective tissue such as… (EDS).

AAI is kind of the same. The main difference between the two is which vertebrae are involved.

In short with both, the ligaments holding her top four vertebrae (the cervical junction) in place are floppy due to the EDS. So, the vertebrae are not held in place properly. They move in ways in which they shouldn’t, interfering with many of the nerves that come out of that part of the spine.

We know she has a 42° overshoot of her C1 over her C2 (her top two vertebrae). It should only be 35°. She has brain stem compression due to odontoid displacement (a piece of bone that allows the C1 to pivot on the C2). We know that her facet joints sublax (partially dislocate) on turning her head to both sides.

The effects of her CCI and AAI are systemic and overarching. Vomiting, seizures, difficulty swallowing, loss of bladder control, cardiac and pulmonary dysfunction and weakness in her muscles and joints to name but a few.

Overarching, systemic effects

Nic has numerous conditions and symptoms which I believe the instabilities are responsible for:

  • Gastroparesis and dumping syndrome. These are conditions which seem to alternate in her. The former is where the stomach doesn’t empty properly, the latter where it empties too quickly. Both cause various, severe symptoms like uncontrollable vomiting. They are both probably related to brain stem compression; specifically the vagus nerve. She was free of gastroparesis from August until October 19, when it returned with a vengeance. This was the longest she had been without it. We believe it came back partly due to a strain on her cervical junction which at first resulted in severe pain extending into her thoracic area and down her left arm. But it also flares up whenever she has a ‘crash’ due to the ME, which she also appeared to have. I think the process here is this: any form of exertion results in post-exertional malaise (PEM) due to the ME. This, in part, impairs her already compromised mitochondria function (due to the ME), thus disrupting energy delivery. Therefore, any underlying EDS/CCI/AAI-related issues (like impairment of stomach muscle/nerve function in gastroparesis) are made even worse. Hence when Nic has PEM, her gastroparesis flares up. This time, the additional issues with her cervical junction appear to have been the trigger of it.
  • Dysphagia. This is where swallowing is difficult due to nerve and muscle dysfunction. Again, this is probably related to vagus or accessory nerve interference in the brain stem or cervical junction.
  • Focal autonomic/impaired awareness and tonic clonic seizures. A neurocardiologist agreed with my theory that the below is likely to be the process which leads to her seizures; in my opinion, once again at the root of this is brain stem compression as the heart’s sinoatrial node’s rate of production is ultimately controlled by the vagus nerve:NICOLA SEIZURE PATHOLOGY
  • I can accurately predict (with an 89% confidence rate) when she will have a seizure. This is due to an average 11% drop (versus her usual mean) in both her systolic and diastolic blood pressures the preceding night.
  • Postural orthostatic tachycardia syndrome (POTS). This is where the heart fails to respond properly when posture is changed. It causes dizziness and imbalance. This could be caused by interference with the vagus nerve, which controls the parasympathetic aspects of the heart; essentially heart rate at rest. In short, the baroreceptor reflex is not being communicated to the medulla oblongata in the brain stem correctly. This causes her heart rate to remain increased after going from a supine/sitting to standing position.
  • Peripheral neuropathy. This is loss of sensitivity in her extremities, like hands and feet.
  • Cerebrospinal fluid (CSF) leak. This is where the fluid that cushions the brain and/or spine leaks out due to a tear in one of the duras (membranes). It happened in August during the postictal stage of a tonic clonic seizure. Nic projected herself out of bed, hitting her head and neck on the dressing table. Kings A&E said it was rhinosinusitis. We had to see a private neurologist to confirm the leak. The symptoms passed by the middle of October. But the leak showed that the vulnerability of her cervical junction has increased, as this was the first time she has had one.
  • Reflex micturition/neurogenic bladder. This is an increased need to urinate and a degree of loss of bladder control, which has manifested more since the CSF leak. Nic has to urinate around once an hour, sometimes more – even though her fluid intake is less than mine. Whether this relates to the brain stem compression is more complex. If it does, it may be due to signals from her bladder’s afferent nerves being miscommunicated. Or, it may be faults in the hypogastric/pelvic/pudendal nerves. But if it’s the latter, that may be an indication of a fault lower down her spine; specifically tethered cord syndrome which we need to get her checked for.
  • Cervical radiculopathy. This is nerve interference in the cervical junction, which causes pain to radiate from this area to other parts of the body (depending on what nerves are compromised).
  • Chronotropic incompetence. This is where Nic’s heart rate does not increase appropriately during exercise. I believe this is caused by interference with the cardiac plexus via the sympathetic trunk and/or left vagus nerve; this controls heart rate over 100bpm. But this could also be related to hormone dysfunction due to the ME, as well as the vagus-controlled parasympathetic response to initial heart rate increase.

Wheelchair bound

But Nic’s muscle and joint strength has also deteriorated. It has got to the stage where she sometimes has to use a wheelchair to go out. This is because the weakness in her legs and lower back pain means she cannot walk more than a few metres without having to stop or being in pain. Sadly, one of only a handful of neurosurgeons in the UK who understand the instabilities didn’t think her weakness was bad enough to warrant surgery on her cervical junction.

What he failed to realise is that Nic practised karate to a proficient level as a child/early teen. This has meant that her strength started out as being more than your average patient. So, what the neurosurgeon considers to be strong now, is actually a worsening by Nic’s standards. In this case, one size doesn’t fit all.

Off to Spain

So, we have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.

This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser. In short, the surgery involves fusing/screwing her vertebrae together to hold them in place. This is not without it’s own serious complications and risks.

To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs. Nic can’t fly with her instabilities due to the risks posed by pressure changes, so boat or train it will have to be. This makes the trip even more expensive.

We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. It may be classical. Ultimately, we want Nicola to be tested so her son can then get the diagnoses he needs. This is because EDS’ are inherited conditions. A positive genetic test for her means he won’t have to endure the years of being told his symptoms (some of which he already has) are ‘all in his head’, as his mother did. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.

UPDATE: for those asking why the NHS cannot help with this. Nicola’s EDS diagnosis has all been done privately, due to two-year NHS waiting lists. The EDS specialist at NHS UCH is now no longer taking patients. This is who we saw privately. We’ve tried to get the NHS to do the genetic testing. But the request from the GP just got bounced back, as did my own request direct to the centre that does the testing.

The additional spinal scans are not available. This is because the NHS does not even recognise Nic’s CCI and AAI. Moreover, if you want cases in point of how the NHS views people who have had spinal fusion surgery abroad, check out my podcasts with Samantha Smith and Victoria Cheney:

CanaryPod: Topple Uncaged meets… #SaveSamantha

CanaryPod: Topple Uncaged – Antonia’s story, part one

CanaryPod: Topple Uncaged – Antonia’s story, part two

All in all, we think this is going to cost around £8,000 to begin with.

Rebooting life

It is a damning indictment of the NHS that any of this has to be private, let alone abroad, in the first place. But Nic is not alone. Google “craniocervical instability” and look under “news” and you’ll see countless other people in her situation. All are fundraising as the NHS doesn’t help.

It’s also a damning indictment of the DWP that the instabilities, plus all Nic’s other illnesses, only ‘deserve’ £58.70 a week.

We hope that once the ME, CCI, AAI and mycotoxicosis (more on that in another article) are resolved as best they can be, Nic can hit the ‘reboot’ button on her life. She has never known being a mother, or an adult, without chronic illness. A whole world of possibilities awaits her, if we can just get her well.

So, once again – if you can help please, please do.

I want to give her some quality of life back. But I need your help to do it. Please donate what you can below or via our GoFundMe page at https://www.gofundme.com/f/urgent-medical-help-for-someone-with-16-illnesses
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Parliament just slapped millions of disabled people in the face

A debate in parliament on Wednesday 5 June showed at best the lack of concern for millions of disabled people. At worst, it is a sign of the contempt hundreds of MPs hold their chronically ill constituents in.

Another day, another debate

A debate on invisible disabilities and access change happened in the House of Commons. It was about impairments that are not always visible in terms of their effects, and what can be done to raise more awareness of these.

Now, don’t misunderstand me. I am the partner of someone who lives with predominantly invisible disabilities and illnesses. So, I welcome any debate into the lives of chronically ill and disabled people and how government and society treats them.

Nic’s story

My girlfriend Nicola Jeffery is just one example of millions of people in the UK ravaged by chronic but often invisible diseases, illnesses and conditions. She currently lives with (yes, it’s gone up again since the last time I wrote):

  • Hypermobile Ehlers-Danlos syndrome (hEDS).
  • Myalgic Encephalomyelitis (ME).
  • Postural Orthostatic Tachycardia Syndrome (POTS).
  • Craniocervical Instability (CCI).
  • Atlantoaxial Instability (AAI).
  • Hypotension.
  • Megaloblastic Anaemia.
  • Peripheral Neuropathy.
  • Chronotropic Incompetence.
  • T3 Hypothyroidism.
  • Mycotoxicosis.
  • Deformations in left foot, left leg shortness.
  • Non-epileptic focal aware and tonic clonic seizures.
  • Polycystic Ovary syndrome.
  • Temporomandibular Joint Dysfunction (TMJ).

Nic is the perfect example of how invisible disabilities can severely debilitate someone’s life. She explained in her usual, eloquent but to-the-point manner in this Twitter thread. I suggest you read the whole thing:

In short, her treatment at the hands of government bodies, medical professionals and society more broadly has been disgusting.

But Nic’s story, which you can read here, is sadly like hundreds of thousands of other people across the world.

So, Wednesday’s debate was an opportunity for MPs to show their concern, understanding and wish for action to happen.

‘Rarely diagnosed’. Rarely debated.

As I tweeted, invisible disabilities are far from ‘rare’ in the UK. As Nic always says, they’re more ‘rarely diagnosed’:

Did MPs turn out in their droves?

Did they hell:

HoC Invisible Illnesses.png

Now, I know what you’re going to say.

All the white bits of paper on the benches are MPs who aren’t physically present but who wish to either vote or make it be known they support the debate. Ironically, they’re ‘invisible’ but still there.

This is not the point.

“Parasites”

As I previously wrote for The Canary, we’ve been here before. A UN committee accused successive UK governments of “grave” and “systematic” violations of disabled people’s human rights. It said they had caused a “human catastrophe”.

But the parliamentary debate into this was almost empty. As I wrote at the time:

empty seats… amplify the impression to the public that disabled people’s rights are a niche issue – one that doesn’t require the full attention of MPs – just a handful to show willing by the party… It gives the feeling that the “grave” and “systematic” violations of… 13.3 million disabled people’s human rights are not really that important…

 

The UN previously said there was a culture in UK society where disabled people were viewed as “parasites, living on social benefits… and [living on] the taxes of other people”. And by not bothering to take half an hour out of their day to sit and listen to a debate over one of the most serious issues in recent history… MPs merely add fuel to this fire.

The invisible disabilities debate was exactly this, with the usual exceptions.

Shout outs and shout downs

The ever-present and indefatigable Labour MP Debbie Abrahams has been a bastion of solidarity with disabled people, and was of course present. Sharon Hodgson and Justin Madders were also there, among others. The SNP’s Carol Monaghan and Angela Crawley were there, the latter making very good points about the Department for Work and Pensions (DWP). Some Tories were present, with Justin Tomlinson representing the government.

But the lack of MPs once again gives the impression that they really don’t care that much. It’s an impression that for many of them is probably spot on. Disabled people, as the UN alluded to, are viewed by many MPs as a burden to be tolerated. They are people who should be kept in the most basic of living standards by the state (if at all) and otherwise forgotten about. Empty benches on this debate were of little surprise.

Underwhelming

Of course, the end result of the afternoon was as underwhelming as the turnout. As Nic tweeted:

Yup, that was just about it.

Forget breaking down the miseducation, prejudice and stigma that exists in the medical world over countless invisible disabilities like ME.

Don’t worry about the scandal of “Fabricated or Induced Illness” (FII) diagnoses, where the state removes children from their parents – often because their disabilities are invisible and bodies like social services think the mothers are making their children’s illnesses up.

Let’s not debate PACE trial – one of the biggest medical scandals of the 21st century that has left people living with ME, EDS, Fibromyalgia and other conditions effectively being told to ‘think themselves better’.

We won’t talk about the scandalously low levels of research funding into diseases like ME, either.

Nor will we mention the barely fit-for-purpose Equality Act 2010, that is even less fit-for-purpose for invisible disabilities.

And let’s ignore the entrenched misunderstanding, abuse and neglect that exists in the very fabric of our society just because people living with invisible disabilities look ‘normal’. From disbelief and accusations of lying to being kicked off accessible seats on buses. It’s there, and it’s not invisible.

Wednesday’s debate was just another example in a long line of parliamentary lip service to disabled people. I applaud the MPs who were present. But the woeful turnout and the limp conclusions offer nothing to millions of people in this country, whom society has thrown on its scrapheap.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Happy Easter. Unless you’re living with ME.

Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.

Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.

Myalgic encephalomyelitis

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here.

Nicola’s story

As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:

She is also now under clinical investigation for:

• Hypothyroidism.
Sheehan’s Syndrome [pdf].
Hypochlorhydria.
Chronotropic Intolerance.

I’ve written extensively about her story to this point. You can read that work here.

So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.

Just another week in the Jeffery-Topple household

Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.

Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.

“Why didn’t you call an ambulance?” I hear you scream down your devices.

For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?

We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.

So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.

Sunday roast? No chance.

If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.

Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.

Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.

Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.

This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.

Enjoy your lamb.

Easter eggs? Jokes.

If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.

Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.

Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.

All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.

Hope you have a good sugar rush.

Binge TV? Out of the question.

If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.

Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.

Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.

Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.

I do hope you have fun watching your Hollywood brain-bleach.

Get ready to party? Not here.

If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.

Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.

Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.

Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.

Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.

Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.

I hope your hangover is worth it.

Happy Easter.

Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.

Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.

And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.

So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.

I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Hi vis vests? Sunflower badges? Next, disabled people will have to wear black triangles.

Two stories caught my attention on Saturday 6 April. Both may seem unremarkable to many. But each demonstrate a slippery slope we’re heading down. The bottom of it is one we cannot let ourselves get to.

You! Yes, YOU! You with the sunflower badge!

One story is that of the autistic boy whose teachers allegedly made wear a hi-vis vest during break times so they could identify him. I’m not going to put too much emphasis on this, as I don’t consider autism an impairment. But the teacher’s thinking behind doing this to him shows, at best, they do. At worst, it shows extreme incompetence, conscious/subconscious prejudice and quite frankly steaming ignorance.

A more telling story is that of Heathrow and Gatwick airports providing passengers living with “hidden disabilities” sunflower lanyards, or neck badges, so staff can identify them.

Look at this happy family about to jet off on their holidays! They must be thrilled knowing that staff will flag the fact they are disabled! Thank God for those lanyards! Yes?

hidden-disability-access-day-756x350.jpg

In my opinion? No, this is not a cause for celebration or a leap forward for disability rights. What these two airports are doing is effectively glossing over the fact that their companies, staff and society more broadly still live with entrenched discrimination, ignorance and prejudice towards disabled people.

A social model

The Social Model of Disability is widely used by campaign groups, political parties and academics as a blueprint for how society should function for disabled people. Essentially, the thrust is that it’s not people’s impairments that make them disabled. It’s society, its systems and structures that do. Solve these, and there’ll be no such thing as disabled people. Because we’ll all be equal.

Utopian I know. But why shouldn’t we be fighting for a society where everyone is equal? To this end, this is the problem with any badge, clothing or trinket that the system puts on disabled people to mark them as ‘special’.

In doing so, it is already singling them out has somehow different to other people. It’s like branding them with a hot iron, showing that these people need more from society than everyone else. Or, as one Twitter user put it about the autistic boy with the hi-vis vest:

Misguided praise

I know many people have welcomed airports’ sunflower badge move. But I’m afraid it’s misguided. All you’re doing is giving your blessing to society and the system continuing to treat you differently. It may seem like a solution to the challenges you face. But it’s not. It is playing into a wider agenda of society leaving disabled people with a few crumbs off the dinner table. You should expect better, and must.

In the case of the airports, why are we tolerating travel that isn’t fully accessible and inclusive for everyone in the first place? Why are we putting up with companies not training their staff adequately on the support needs of all their passengers? And why are we rolling over and accepting that a plastic badge with a flower on it will do? Even with the nuance of it being a short term fix?

The degradation of society

But moreover, we have a political system that’s becoming more and more polarised by the day. The far right is on the rise across the world. Disability hate crime rose by 50% in one year in the UK. The medical profession still discriminates against sick and chronically ill people.

The UN said the UK government and media “have some responsibility” for society seeing disabled people as “parasites, living on social benefits… and [living on] the taxes of other people”. And it said these “very, very dangerous” attitudes could “lead to violence… and if not, to killings and euthanasia”.

In 2016 a learning disabled man was lynched in England.

So, you think branding yourselves as ‘different’ is a progressive move?

A warning from history

History taught us what happens when a political system and its ideology intentionally marks people out as different. As libcom noted about the Nazis:

The Black Triangle badge was for prisoners who were deemed to be Antisocial, the official name was ‘Arbeitsscheu’ which literally translates as work-shy. But long term unemployment wasn’t the only criteria for imprisonment, you could also be declared ‘Arbeitsscheu’ for refusing or being found unfit for compulsory labour such as digging trenches for the Autobahns or working in armaments factories. You could also be branded with the triangle if you were suspected of being of poor moral character, common targets for the anti-social category included the homeless, alcoholics, drug users and sex workers.

 

Victims also included the Roma and people with behavioural abnormalities and disabilities that were deemed not serious enough to warrant euthanasia were also rounded up

“Work-shy”. Ring any bells?

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Viewed through the 21st century prism of an increasingly right wing and intolerant society, branding disabled people so they can be recognised as needing ‘special’ treatment doesn’t seem quite so Disney now, does it?

But yet still people accept it. Why?

It’s all political

Herein lies the problem with the chronic illness area of the disabled community. Oh, and that statement in itself will probably raise a few eyebrows. Yes. People with invisible diseases and illnesses are part of the disabled community, however much some people want to segregate them.

The problem is that too many sick and chronically ill people are failing to apply politics to the abuse, dismissal, neglect and human rights violations the system metes out to them. Myalgic encephalomyelitis (ME) is a perfect example of this.

I’ve written extensively on the PACE trial. You can read a background article I did for The Canary here. As I wrote, the trial:

was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

 

The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.

 

In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.

PACE trial subversion

In short, PACE trial was in my opinion designed for numerous reasons, not least to:

  • Deny people living with ME state welfare and private insurance payments.
  • Suppress the real causes of ME, which are probably based in virology/immunology.
  • Also suppress real treatment for ME, which probably lies outside the realms of many man-made pharmaceuticals.
  • Therefore further the bond between the corporate pharmaceutical industry and the medical profession.

But whatever the reasons for PACE trial, what we do know is that it was intentionally designed to maintain the notion that ME was, in part, ‘all in people’s heads’. And that the best treatments for it were talking therapy (‘think yourself better!’) and exercise (work harder you work-shy hypochondriacs!’). It is undoubtedly a medical scandal that firmly has its roots in our political and economic systems.

Yet many people living with ME still view it as an issue of medical negligence, and nothing more.

I understand why. When you are already struggling to get medical professionals to even acknowledge your diseases, illnesses and impairments are real, the politics of why they’re not is probably the furthest thing from your mind.

But that needs to change. Because otherwise, people living with ME, and sick and chronically ill people more broadly, will be sleep-walking into a dystopian future.

A media war

Acceptance of sunflower lanyards is part of this. But another is to do with the recent media smear campaign against people living with ME and their advocates’ objections to PACE trial.

As I wrote across three articles, in March the media, coordinated by PR organisation Science Media Centre (SMC), kicked back against people criticising PACE trial. It was an effective war, and a nasty one at that. SMC planted (or “seeded“) stories defending PACE trial and its authors. People widely condemned it, with the Times coming in for particular criticism.

Yet a few days later, both the Times and the Guardian published articles which seemed more supportive of people living with ME. The Times one [paywall] was by Dr Mark Porter, where he seemed sympathetic towards the issue. The Guardian one was by Dr Frances Ryan, where she seemed to defend people living with ME and call out the abuse they suffer.

In short, neither was really advocating for people living with ME.

Seeded platitudes

Porter’s column was as passive-aggressive as they come. While he stood up for people living with ME, he still defended PACE trial and made his dislike of the criticism of medical professionals involved in it clear, albeit doing both in a backhanded way.

Why was his column so half-baked?

I believe his article was seeded by the Times‘ editorial machinery/SMC as much as its previous ones. As a journalist, I know how the game works. And Porter’s article was a blatant attempt by the Times at presenting ‘balance’ and placating the backlash it had received.

Controlled opposition

Ryan’s column, widely welcomed by the ME community, was little better. As a journalist, I know what to do when you want to write an article that won’t bring any controversy to your door. You paint the criticisms of your subject matter as other people’s views. As Ryan wrote:

The trial has since been criticised as “not robust” by scientists, while some patients reported that their conditions actually deteriorated after taking on the exercise. Crucially, many people with ME believe this research, and the media’s ongoing coverage of it has added fuel to the belief that their illness is not real…

It’s not Ryan or the Guardian saying it. It’s other people. She’s just reporting it. ‘PACE trial’ failed to get even a single mention by name in the article. Nor does the piece give reasons why people are criticising it. So, why – when it’s the central concept to the whole story?

Except it wasn’t. Ryan used PACE trial and people living with ME as a hook to discuss abuse towards disabled people more broadly. A subject matter not to be dismissed and she makes some excellent points. But as an article, it did nothing to further society’s understanding of ME and why PACE trial is crucial in all this. Yet it may as well have been hailed as a revolution by some people.

Again, why was it so half-baked?

Unconscious bias?

I don’t believe opinion writers like Ryan and left wing commentator Owen Jones are told what to write. I believe they are moulded by the systems around them to know not what to write.

As press analysis organisation Media Lens noted about how mainstream journalists end up being “synchronised metronomes churning out propaganda” (quoting someone else):

‘In the early stage, you’re a young crusader and you write an exposé story about the powers that be, and you bring it to your editor and the editor says: “No, kill it. We can’t touch that. Too hot.”

 

‘Stage two: You get an idea for the story, but you don’t write it and you check with the editor first and he says: “No, won’t fly. No, I think the old man won’t like it. Don’t do that, he has a lot of friends in there and that might get messy.”

 

‘Stage three: You get an idea for the story and you yourself dismiss it as silly.

 

‘Stage four: You no longer get the idea for that kind of an exposé story.

 

‘And I would add a stage five: You then appear on panels, with media critics like me, and you get very angry and indignant when we say that there are biases in the media and you’re not as free and independent as you think.’

Essentially, journalists and writers unconsciously self-edit after they’ve been playing the game long enough. It becomes natural to them to omit certain points, or phrase things a certain way, just to avoid any editorial hassle.

I believe this is the position Ryan finds herself in. She knows that if she goes too deep into PACE trial it won’t get published and if she makes accusations it will just be edited anyway. So she does neither, putting herself firmly on the fence. Oh, and keeping her job and position in all this to boot.

Why is this relevant to the sunflower lanyards?

Because it’s all one in the same thing.

Rules of engagement

In the same way the lanyards are actually grossly unhelpful (and dangerous) for sick and chronically ill people in the long-term, so are cleverly worded but ultimately half-baked, ‘safe’ and insipid articles in the Guardian.

Both add to the political dumbing down of ME. And in the long term, if we continue to accept these crumbs from the table, eventually they’ll be no bread left.

If you support UK Labour Party leader Jeremy Corbyn, you’ll know there’s researched evidence of the media bias against him. For the sake of balance, if you’re a UKIP supporter you’ll know there’s researched evidence of the media bias against Brexit.

In the realms of politics, we know that the media and ultimately the system wishes to keep the centralised status quo.

That principle must be applied by sick and chronically ill people to the battles they are fighting. Because all these battles, not least around PACE trial, are political. Therefore the rules of engagement are the same. Otherwise, nothing will really change. And you’ll be forever wearing sunflower lanyards.

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here; I’m now effectively a full time carer. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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Brexit Britain: where dead disabled people are less important than the ‘A50’ petition. #PutItToThePeople?

Brexit chaos has continued unabated this week with a petition to revoke Article 50 (A50) getting over four million signatures by 10am on 23 March. Also on 23 March was the #PutItToThePeople march in London.

Good for the “FBPE” crowd. Because while they obsess over the EU, there’s another petition out there. It’s calling for an inquiry into the deaths of disabled on the Department for Work and Pensions’ (DWP) watch. Sadly it has only got around 0.25% of the signatures of A50 one. Perhaps a damning testament to how ludicrous the UK political arena has become.

So, we’re in a mess with Brexit. I won’t furnish you with an update. Because by the time I hit “publish” on this article the situation will probably have changed. But in the midst of all this chaos another petition is doing the rounds. It’s one that I think is far more important than the other, liberal wet dream.

Justice for Jodey

It’s called:

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP…

Here’s the link:

https://petition.parliament.uk/petitions/243337

If you want to read the full background and Jodey’s horrific story, please read John Pring’s Disability News Service article here. But as he wrote:

Relatives of six disabled people who died due to… (DWP) failings have backed a new petition to MPs that calls for an independent inquiry into deaths linked to the department’s actions.

 

The petition… says such an inquiry should also investigate potential misconduct by ministers and civil servants.

 

And it says that any evidence of misconduct contributing to serious harm or deaths of benefit claimants should be passed to the police for a possible criminal investigation.

 

The petition… brands DWP ‘institutionally disablist and not fit for purpose’.

 

And it calls on DWP to ‘urgently change its policies and administration of social security benefits to make the safety of all claimants a priority’.

Sadly, I think six people’s deaths under the DWP’s watch is just the tip of the iceberg. The figures back this up as well.

Tens of thousands. Dead.

Nearly 30 people a day have been dying on the DWP’s watch, either waiting for benefit decisions or when the department told them they were ready to move towards work. Then, the DWP was forced to reveal 21,000 people died waiting for it to pay them money it owed them.

Meanwhile, an Oxford University study found that at least 590 people had taken their own lives, due in part to the Department for Work and Pensions’ (DWP) Work Capability Assessment.

This is on top of five successive UN reports, one of which slammed successive governments for committing “grave” and “systematic” violations of disabled people’s human rights. And another which branded the situation a “human catastrophe”.

All of this is without the self harm, abject misery, poverty and mental torture which the DWP has had a hand in.

A bunch of odious shits

So, why so few signatures for this petition, yet so many for the A50 one? Of course, if you’ve signed both – I salute you. So please disregard this section.

If not…

Let’s be honest: of course the A50 petition would be more important to some (not all) of the FBPE group.

Some of them are Lib Dem supporters, who helped push through harsher DWP benefit sanctions in return for the Tories passing their 5p carrier bag charge. No, really.

Then, some of them are Labour supporters from the Blair school of thought. The same ideology that started the DWP on the path to a “human catastrophe”.

Also, some of them are ‘compassionate Conservatives’. You know the ones – the Anna Soubry’s of this world whom TV show (and alleged disability advocate) The Last Leg think is amusing to have on as a guest. Actually, Soubry and her ilk are the worst kind of Tories: feigning care with one hand while metaphorically punching disabled people with the other.

‘Othering’

But moreover, politician’s and the media’s demonisation and “othering” of sick and disabled people over the years has got us to this point. A point where there can be tens of thousands of deaths and the public barely flinch.

Of course, sick and disabled people dying now (as in, right now, probably 30 today) is far less important than the self-serving motivations of these collective odious shits and their FBPE obsession.

Sorry, what do you want?

You can argue with me until you’re blue in the face that Brexit will make life worse for sick and disabled people. Maybe it will. But point me to the evidence of how the EU stopped five UN investigations, tens of thousands of deaths and immeasurable suffering caused by the Tories and the DWP, previously?

Also, explain to me how you will reform the inherently undemocratic, corporatist capitalist EU for the better, to improve the lives of sick and disabled people in this country – when the EU project itself will either implode, or become neoliberalism on steroids?

And tell me how revoking Article 50 and/or a People’s Vote will not play into the hands of the far-right figureheads, already embolden by the Brexit chaos, plus seemingly unrelenting in their racism even after the New Zealand massacre?

I personally think, as I did in 2016, we’re screwed either way. So we need to get on with the job of dismantling the current systems of power where we can affect them: in this country.

Stop the deaths, or get lost

The first part of that is to stop people dying. Unless my moral compass is completely skewed and I should be focusing on where people can fish after Brexit? Would that be better for you?

Seriously, screw the people who think Brexit is more important than people dying, right now, in this country. And screw the self-serving horse you rode in on. Also, screw those who’ll tell me ‘We don’t!’ yet can’t put the energy they have into the FBPE movement, into fighting for sick and disabled people.

Anyone else who has a shred of moral credibility and half a heart, please sign the DWP petition here.

I no longer write for The Canary (due to my girlfriend’s chronic illnesses – read about that here) so any donations to keep this site and my writing here going, or help me and her, are gratefully accepted. Thank you.
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