Energy-limiting conditions and Human Rights

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.

Some background: What is the UNCRPD? And what is a ‘Shadow’ Report?

The United Nations’ Convention on the Rights of Persons with Disabilities    (UNCRPD) is the first international treaty to enshrine in law the full human rights of all disabled people. It was drafted through an unprecedented process of collaboration between the United Nations, disabled activists and Deaf and disabled people’s organisations from all over the world, and was ratified by the UK Government in 2009.

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.

Chronic Illness Inclusion is very proud to have been involved in producing this Shadow Report. We compiled a selection of evidence from our many reports and surveys to show how the rights of people with Energy Limiting Conditions (ELCs) or Energy Limiting Chronic Illnesses (ELCIs) under the UNCRPD are not being met.

Our submission has five parts, each tailored to specific Articles of the UNCRPD:

1. Disbelief and Lack of Awareness: Articles 8 (Awareness-raising) and 27 (Work and employment). We discuss the public’s lack of understanding of ELCs, which, compounded by myths about benefit fraud, leads to widespread disbelief that people with ELCs are ‘really disabled’, resulting in harassment, discrimination and difficulty accessing workplace accommodation for people with ELCs.
2. Remote Access and Participation: Articles 9 (Accessibility), 27 (Work and Employment) and 30 (Participation in cultural life, recreation and sport). We argue that remote access to both work and recreational, cultural or other social activities should be recognised as an accessibility need for people with ELCs.
3. The Impact of COVID-19: Article 11 (Situations of risk and humanitarian emergencies). We discuss the impact of the pandemic on people with ELCs, many of whom report worsened health, struggles accessing food and basic necessities after being left off the government’s list of the vulnerable, and widespread discrimination as their lives were not considered worth saving.
4. ELCs and Experiences of Healthcare: Article 25 (Health). We discuss the label of ‘medically unexplained symptoms’ being applied to many ELCs, resulting in psychological therapies or other inappropriate treatments. These treatments are based not on scientific evidence but on cost-reduction strategies, and often cause serious harm to patients, some of whom become too traumatised to continue seeking healthcare. We also discuss the poor access to routine healthcare for many housebound people.
5. Failures of Benefits Assessments: Article 28 (Adequate standard of living and social protection). We discuss the ways that benefits assessments fail to account for both the fluctuating nature of ELCs and the impact of cognitive fatigue. These assessments are underpinned by suspicion of people with ELCs, who are assumed to be faking or exaggerating their illness.

You can read our full report here.

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).

Looking forward

We hope that this marks the beginning of the inclusion of ELCI within the international disability rights agenda. As many of our impairments are contested, we face particular barriers of disbelief, invisibility and medical harm that can be quite different to the experiences of many other disabled people. However, Chronic Illness Inclusion firmly believes that, whatever our differences, disabled people are stronger when we stand in solidarity together against the unjust, exclusionary society that oppresses us all.