UK: Energy-limiting conditions and Human Rights: The Chronic Illness Inclusion's submission to the UN as part of a 'shadow report'

[Andy]

"Earlier this year, Disabled People’s Organisations gave testimony to the United Nations about the UK government’s progress, or lack thereof, in implementing our human rights. Chronic Illness Inclusion’s testimony was part of this report, but now we can share our full, unedited submission. Lead author, Leonora Gunn, explains the process and the key evidence we gave on behalf of people with energy-limiting conditions and chronic illness."


"After being approached by Disabled People Against Cuts in 2012, the Committee of the UNCRPD investigated the impact of the UK government’s welfare reforms on its disabled citizens. In 2016, the Committee published their report, accusing the UK government of “grave” and “systemic” violations of disabled people’s human rights.

As part of the monitoring process, in 2021 the UK government published a follow-up report to the UNCRPD in response to its 2016 recommendations. A Shadow Report has been produced by individual disabled people and Deaf and disabled people’s organisations across the UK, led by Inclusion London, to give our perspective on the UK government’s response to the 2016 report. The Shadow Report finds that the situation for disabled people in the UK has got worse since 2017, with the UK going backwards on disability rights."


"Of course, not all of our evidence could make it into the final Shadow Report. Ellen Clifford and the team at Inclusion London had a monumental task in condensing the huge amount of evidence they received into a single report and have worked with incredible dedication to ensure that all disabled people’s voices were heard. We are thrilled to see that ELCI is included in the report’s glossary, and that violations to the rights of people with ELCIs are mentioned three times in the report:

• In relation to Article 25: Health, the report recognises that, in criticising or dismissing NICE’s ban on graded exercise therapy (GET) for ME/CFS, the Royal College of Psychiatrists and other physicians are ignoring the lived experiences of people with ELCIs (pp.46-47).
• In relation to Article 9: Accessibility, the right to remote access is recognised as a reasonable adjustment for people with ELCIs (pp.21-22).
• In relation to Article 28: Adequate standard of living and social protection, the inadequacy of descriptors for PIP assessments for people with ELCIs is recognised (p.54)."

Full blog at https://chronicillnessinclusion.org.uk/2022/08/13/energy-limiting-conditions-and-human-rights/

 

[Samuel]

i will be interested in where this goes. i believe hr is a correct characterization and needed thing to do. both with respect to mass hr violation and mass hr atrocity crimes. and other stuff.

one question from my experience is enforcement. do they take what they need to seriously vs. go along with the persecution, do they enforce, and with what teeth. for example, some parts of the un don't really have any power, but have used diplomacy to get results. other parts have used persuasion at a more local level. others have legal teeth but capture/custody or extradition issues. etc.

and other entities than the un use other means, e.g. ai's letter writing campaigns. and other legal teeth. prison terms have been handed down and criminals pursued many years later with no statute of limitations in some cases. not always at the international level. there are various national level options.

the un hr system in particular is complex. i now have a strong ptsd-like reaction [this is just me; i don't think it will be a general problem] from dealing with a different part of the un hr apparatus which was NOT specifically a part dedicated to a treaty.

that, to our knowledge at this time, did not visibly go anywhere, despite supposedly being supposed to be published. it could end up being good documentation that the un was notified.

i do strongly believe, despite that, that all of this must be pursued. as many reports as possible to each of as many parts as possible with accurate documentation until they realize this is a mass hr problem of such urgency and magnitude to be taken very seriously right now. thank you very much to all who pursue hr.

 

[bobbler]

i will be interested in where this goes. i believe hr is a correct characterization and needed thing to do. both with respect to mass hr violation and mass hr atrocity crimes. and other stuff.

one question from my experience is enforcement. do they take what they need to seriously vs. go along with the persecution, do they enforce, and with what teeth. for example, some parts of the un don't really have any power, but have used diplomacy to get results. other parts have used persuasion at a more local level. others have legal teeth but capture/custody or extradition issues. etc.

and other entities than the un use other means, e.g. ai's letter writing campaigns. and other legal teeth. prison terms have been handed down and criminals pursued many years later with no statute of limitations in some cases. not always at the international level. there are various national level options.

the un hr system in particular is complex. i now have a strong ptsd-like reaction [this is just me; i don't think it will be a general problem] from dealing with a different part of the un hr apparatus which was NOT specifically a part dedicated to a treaty.

that, to our knowledge at this time, did not visibly go anywhere, despite supposedly being supposed to be published. it could end up being good documentation that the un was notified.

i do strongly believe, despite that, that all of this must be pursued. as many reports as possible to each of as many parts as possible with accurate documentation until they realize this is a mass hr problem of such urgency and magnitude to be taken very seriously right now. thank you very much to all who pursue hr.

No you are not alone. The way the situation has been over the last few decades has made me unsafe (not 'feel' unsafe, but actually unsafe) and have to wake up and think each day how doI protect myself e.g. freedom and all things that come with the issues the system and myths caused then allowed above even keeping myself safe with an illness (which is badly described so doesn't come easy re: adjustments and asking for space).

I have never had the rights normal people have of feeling safe, feeling free, feeling entitled to a job or anything - nevermind confident that should I ask for adjustments - for which I'd have had to be very frank and say 'I can't do these hours' that they would be honoured. Part of this was the fiction people could hide behind, part of it the truth they obviously do know of how little is needed to make things impossible when you have an energy-limiting condition. It is the ultimate 'playable' condition for others.

And now - well even trying to scrape for things I should have applied for years ago but was too terrified to do when it was easier, still involve me risking - yes actually risking - my freedom and safety to do so. Because the informtion and protocols are so poor and disregarded that going to a range of professionals and 'being honest' even in any tiny way is someone stitching you up potentially for being forced into something that will hurt you.

I've been terrified, rightly, out of access to things I earned but weren't safe at that time for me to apply for. Terrified to apply for things I should have had if I had any other illness with support to do so, but instead had to consider and choose between my health being significantly affected and feeling humiliated (and still potentially declined) or trying to keep what was lef of that and having nothing.

The decisions we are forced into aren't decisions. I agree we have no rights. Some might do if they luck out and support begets support somewhat and makes them safer and feel safer and supported with some net - but still a bad system doesn't mean they've been safe. Those who have no support feel like a sitting duck daily. Waiting to see who gets fed up of their face first and stirs things up to get you thrown into some treatment that harms. With not a person who would stop that. Just disappear. Whilst everyone tells themselves (happily glad to have relieved themselves of guilt of having to help) they did the right thing.

Of course it is human rights. What does anyone who gets severe enough have as a right they could enforce - given even asking someone means you'd lose the argument just by someone energying you out with the conversation. And all access has that same issue without intervention that makes it different.