Reprint: Disabled people have come so far – don’t undo all the progress
The UK is at risk of breaching international obligations to disabled people, so I’m proud to help safeguard independence
As a severely disabled person, I am reminded every day of the tremendous progress made over the past 30 years in the UK to enable disabled people to become active citizens. Autonomy and freedom would not have been part of my vocabulary half a century ago. I might have been reliant upon my family for support, with the prospect of being put into an institution when they could no longer cope.
Instead, at 52, I am an independent crossbench peer and member of the joint committee on human rights (JCHR), which reports this week on its 12-month inquiry into disabled people’s right to independent living.
Since leaving university I have had the privilege of being involved in helping develop the complex weave of legislation and public policy necessary for disabled people to live in, and be part of, their community.
Keeping millions of disabled people inactive and dependent is costly, from a financial and moral point of view. I have witnessed disabled people raise families, work or simply be more cost-effective by keeping healthy and taking greater control over their personal care. It’s not been perfect. But by many standards, we were ahead of the game compared with much of Europe.
And now decades of positive progress are at risk of being reversed as economic austerity is used as justification for denying independence.
That is why I am so pleased to be part of the strong and unambiguous stand taken by the JCHR in publishing its report. We listened to a whole range of expert witnesses and took into account extensive research and consultation, looked at the context of the UN convention on the rights of persons with disabilities (UNCRPD), which was ratified by the UK in 2009.
Although I feel I have the right to independent living, the legislative and policy framework simply isn’t in place to make it a right; and what there is, is in danger of disappearing fast.
If my local authority cuts my care package or demands I transfer to NHS care (because they regard using a ventilator as the trigger for health services), I lose control of my life. I might have to leave parliament, or give up work altogether (because I need social care direct payments to do everything, from eating a sandwich to delivering a speech). I am only a few bureaucratic decisions away from returning to the inequality I endured at 18. It wouldn’t take long to transform all my relationships with my colleagues, partner, family, friends into one which gives little or nothing to anyone. Everyone loses.
The fact that all this could happen without my consent hangs over me and thousands of others. That is why I am so glad the JCHR report recognises and recommends the need for freestanding legislation to protect the right to independent living in UK law.
The report addresses recent government and local authority measures and austerity reforms that impact upon independent living for disabled people; such as reforms to disability living allowance and housing benefit, closure of the Independent Living Fund and restricting eligibility for social care to “critical or substantial” needs only.
The JCHR found no tangible evidence of the government giving due consideration to the UK’s obligations under the UNCRPD during this critical reforming time.
This lack of regard to the convention, coupled with the potentially retrogressive impact of these reforms, risks placing the UK in breach of its international obligations. This report is so timely. It sets out the risks to progress on independent living and makes sensible, achievable recommendations.
The UK’s international reputation in public policy and legislation which places more power in the hands of disabled people to assume control over their own lives, and to be included in all areas of life, is clearly in jeopardy.
Independent living has never made more sense. The government must heed the JCHR report and act fast. Otherwise history will repeat itself – the next generation of disabled people should not have fewer rights than I’ve had.