A human rights agenda from people living with health conditions or disability

It is eight years since the UK ratified the UN Convention on the Rights of Persons with Disabilities – and, as former Minister Anne McGuire told us this year: ‘It was my privilege to sign the Convention at the special meeting of the General Assembly of the UN in New York. There was an air of optimism at that time and the ratification…was widely seen as yet another step towards equality for disabled people in this country’.

For disabled people, the Convention meant the right to be included in the community, the right to an education, the right to work, the right to an adequate standard of living, freedom from institutionalisation – and much more. In short, it signalled being equal to all other citizens, having the right to fully participate and belong.

If these rights were realised in everyday terms the results would not only fundamentally transform the lives of people living with long-term health conditions or disability – who incidentally make up one in five of the UK population - but also their families, communities and society as a whole. To give just a few examples:

  • Of all people living in poverty in the UK, almost half (48%) are either disabled themselves or are living with someone disabled in their household. If disability-related poverty was systematically tackled, there would be an immense impact on reducing poverty overall[1].
  • Independent living means having support that you choose (for instance, employing a personal assistant), so you have day to day control over your life just as everyone else does: for instance, getting up when you choose, going out to do the things that matter to you. Good independent living support keeps people out of nursing homes, assessment and treatment units, hospitals and other institutions and enables people to be active in family life (being grandparents, parents) and all types of community.  
  • Setting up and running businesses is central to Government’s ambitions for UK growth. Disabled people are more likely than non-disabled people to be self employed or entrepreneurs[2]  - partly because of ‘pull’ factors (the attraction of working for yourself, perhaps organising your work around management of your health condition); and partly ‘push’ factors, being unable to find employers who will be flexible and accepting. Yet Government has not yet ‘fixed’ the rules across Departments that prevent disabled people from sustaining self-employment – simple things like recognising that a business can be viable when someone has had time out for health reasons. This affects tax issues and eligibility for Access to Work. If these rules were fixed, more disabled people would be contributing to our economy[3]   

This is an agenda that demands the widest support. It is not about residual support for a small group of ‘really’ disabled people but about investing in the full participation of disabled people more broadly who, with some support, can fulfil their potential.

The state of play in 2017

So how do disabled people view progress on human rights now? And has the optimism of the late 2000s been borne out by evidence? These are timely questions, since 2017 is the year that the UN Committee will undertake its routine examination of the UK under the Convention.

Our report to the UN gives evidence of retrogression across a number of Articles of the Convention; and stasis in others. There have been some specific positive initiatives in the last few years – from human rights commitments in the Care Act 2014 to recent measures to make apprenticeships more inclusive – but regrettably they do not add up to a ‘progressive realisation’ of the rights of the Convention. We found that social care cuts were leading to isolation behind closed doors, fears of re-institutionalisation and declining choice and control - undermining the right to independent living. Social security cuts have impacted disproportionately on disabled people. Our mental health and mental capacity laws do not comply with the Convention; and we have seen ever growing levels of compulsory detention and treatment, and continuing institutionalisation, with – to quote the Law Commission – a system of safeguards for deprivation of liberty that are ‘not fit for purpose’. Numbers of disabled children enjoying inclusive mainstream education have gone down and the disability employment gap has stayed static at around 30% for a decade.   

We presented our report to the UN alongside reports from other Disabled People’s Organisations, we presented our report in Parliament  – and there was huge common agreement on the issues of greatest concern.

Priorities for 2017 and beyond

Baroness Jane Campbell has noted that if the UK wants to maintain the mantle of world leader on disability rights, it must see the forthcoming examination by the UN Committee as an opportunity to listen and take stock[1]

The aftermath of the financial crash in 2008 has hit disabled people hard. It will take a long-term strategy to ensure the UK once again makes substantial progress towards independent living and full rights to participation. This needs to include an overhaul of our broken system of benefit assessments and sanctions: making a start on this reform would help rebuild disabled people’s trust after a tough period of cutbacks. And reversing the very recent reduction to Employment and Support Allowance, for which there is to our knowledge no expert support, would give a positive starting signal. There are other potential early wins. Independent investigations of unexpected deaths in mental health and learning disability institutions – as happens with deaths in prisons and police cells - would not be so hard to implement (and the Care Quality Commission is already planning improvements in this area). Nor would requiring health services to reduce and ultimately eliminate restraint and seclusion, as is already required in the USA. Nor would ramping up inclusive apprenticeships and more user-friendly disability employment support services. 

2017 is an opportunity for a fresh start on disabled people’s rights. With honest dialogue between disabled people’s organisations and Government, it should be possible to put in place a mix of longer and shorter term goals, and set a path to full inclusion.       

Liz Sayce is Chief Executive of Disability Rights UK

[1] http://www.npi.org.uk/files/7414/7087/2444/Disability_and_poverty_SUMMARY_REPORT_FINAL.pdf. Poverty is calculated after accounting for the costs of disability

[2] Jones, M. and Latreille, P. (2011) ‘Disability and self-employment: evidence from the UK LFS’. Applied Economics, 43(27): 4161-4178.

[3] All Party Parliamentary Group on Disability (2016) Ahead of the Arc. See https://www.disabilityrightsuk.org/news/2016/december/mps-and-peers-offer-plan-support-six-million-disabled-people-work