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?
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:
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?
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.
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.
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?
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.