You might not have heard of the old Bill of Rights Bill (so good, they named it twice), and now, it almost doesn’t matter if you didn’t.
But disabled people have spent the past few months somewhat terrified as it passed slowly through the two Houses in Parliament, a legislative Nazgul threatening to drag some of us back to the Victorian days of asylums.
And then Liz Truss rocked up, took one look, and threw it out the window.
I imagine this to be the window of a pimped up rapper car – say, Drake’s Rolls Royce Phantom, Therese Coffey in the back, booming out Dre on the subwoofers – so surreal is this move for many of us fearing that a woman to the right of right would be all over rolling the bill out as fast as possible.
We were wrong. She’s recognised it as a mess, and dammit, we feel heard.
The last government refused to allow any pre-legislative scrutiny of the Bill from the Chairs of the Public Administration and Constitutional Affairs Committee, Justice Committee, Lords Constitution Committee, and Joint Committee on Human Rights, all supported by over 150 civil society groups, the Domestic Abuse Commissioner for England and Wales, the Victims’ Commissioner for England and Wales and the Children’s Commissioners of Scotland, Wales and Northern Ireland.
And it initially refused to release accessible formats of the Bill such as easy read and audio versions until over 200 Disabled People’s Organisations (groups run by and for disabled people) complained and the threat of legal action was raised.
The Bill, amongst very many other dodgy things, sought to undermine the State’s duty to protect our rights.
These ensure that disabled people are able to live dignified lives, and enabled families to visit their loved ones in care homes during the pandemic.
They are also the foundation of safeguarding – something hugely important when you consider recent cases of autistic people banged up for their own ‘safety’, or homes neglecting duties which result in disabled and older people being left without proper care, or Patient A, an autistic child literally locked in a room with a serving hatch, unable to receive meaningful contact with other humans.
The Bill sought to knock out whole swathes of the Human Rights Act (HRA).
The HRA also enabled the survivors of the ‘black cab’ rapist John Worboys, the families of those who died in the Hillsborough disaster, and the loved ones of people who have died in State custody and State institutions (many with mental health conditions), to seek truth, justice, and accountability.
The Bill of rights sought to undermine the fundamental principle that people have human rights because, well, we’re human. The Bill was more concerned with whether people are deserving or undeserving of rights.
The Bill was also seeking to ensure that public bodies would no longer be required, or be able, to apply other laws, such as mental health or child protection laws, in a way that respects human rights.
Kirsten used the HRA to challenge the inhuman treatment of her autistic son in a mental health unit.
If the Bill had become law, people like her son would have had no form of redress.
The keys would have literally been thrown away.
But instead, the Bill has been thrown away. So if it’s dead now, why am I writing about it?
Because life is precious.
And that emphatically includes disabled life. We ain’t leaving.
We like breathing. And if you think such bills are not and won’t ever be of concern to you – remember: right now, you are only pre-disabled.
Unless you die young, you will join our ranks.
And then any future versions of these kinds of proposed laws will affect you too.
Awareness is readiness. But for now at least, our rights are safe. No diggity.
Online movers and shakers are fakers?
Interesting article by Emma James in the Daily Mail recently, about teenage girls (start the undermining young, folks!) who are posting “upsetting footage of themselves in hospital or crying on social media” who “often end up competing with each other for who is 'sickest'.
The article talks about their ‘invisible illnesses’ (quote marks the Mail’s). You can almost see the disbelieving nod and wink that goes with.
‘Experts’ (my quotes) say that “while functional disease is a real and chronic problem", it is often not the one the teens "think they have."
The article continues about how some people “accuse doctors of 'medical [sic] gaslighting' them, claiming that they are dismissing or belittling their patients pain”.
Relate. I have Fibromyalgia. I was specifically told this by a senior pain clinician. It’s an invisible illness which comes with a lot of chronic pain (I have a small, delicious selection box of these).
He refused to formally diagnose it on paper, not because I don’t have it, but because he said that any condition I had going forward would be stuck under the Fibromyalgia banner and not properly investigated.
He sent me on my way with a prescription for pain killers (which will in time rot my guts and cause me more issues).
None of that experience feels like a win.
The article talks about other women being told to lose weight to help their condition. Again, got that hymn sheet and have been made to sing out loud about losing weight for years by doctors, trained professionals, who had never heard of the condition Lipoedema, for which it is impossible to lose the diseased fat with dieting.
A disabling condition I have (visibly!) had for 36 years. I’ve had my diagnosis for less than a decade. Because medical ignorance and/or gaslighting. The cure? Surgery.
Which the NHS won’t fund. Around a tenth of women have this condition, most undiagnosed.
People with invisible illnesses have real conditions. These are disabilities. When people post online, it is to help them find empathy, a tribe, and help raise awareness – to help us deal with the daily shitshow of abuse we endure by being disbelieved.
Being told we shouldn’t use wheelchairs if we can walk.
Being told we’re not really ill and we’re faking it for sick leave or benefits. Being told we’re attention-seeking.
The article also points out that some people make money from their social channels talking about their disabilities.
Well, in a zero hours contract world where around only half of working age disabled people can get jobs compared to around 80% of non-disabled people, you’d think the Mail would applaud the initiative.
Just think of the taxes that would be generated. But alas, one of the world’s biggest clickbait sites, with huge social media channels, doesn’t see the irony in trying to bullyboy disabled people out of the digital playground.
Anna Morell works for Disability Rights UK – the UK’s leading organisation led by, run by, and working for Disabled people.
It works with Disabled People’s Organisations and Government across the UK to influence regional and national change for better rights, benefits, quality of life and economic opportunities for Disabled people.
Find out more about DR UK here.
Contact DR UK here.