Independent living – what exactly is it?

By Lorraine Gradwell

I’m really pleased to be writing the first blog on this site, albeit with a little trepidation! This is an important blog: what can I say, I asked myself, that’s pithy and clever, that no-one else has said?

Then of course I realised that that’s not the point: the point is to make this simple, because independent living (IL) is a simple concept that unfortunately gets made complicated by all sorts of diversions and interpretations.

I’m not intending to write a history here, but the very first Centre for Independent Living (1) (CIL) was in Berkeley, California in 1972 when a small group of disabled students negotiated personal assistant support that enabled them to access their studies and university life – the CIL model was born!

Just a few years later in the UK the analysis that resulted in the social model of disability (2) was being developed, and led to the Fundamental Principles of Disability, a significant analysis of our position in society and the reasons for it (3) produced by the Union of Physically Impaired Against Segregation (UPIAS) and leading indirectly to the analysis of the seven needs for independent living. (4) In the early to mid 80s there was a large growth in CILs and Coalitions in the UK as disabled people began to organise themselves and took up these analyses. Direct payments schemes were set up, often run and supported by disabled people’s organisations, and the concept of living independently in the community started to be common currency.

However the push towards implementing the independent living concept has, it would seem, flowered briefly and then rather stagnated – awash in a mesh of care, re-ablement, coproduction, personalisation, self-directed support, person-centred planning, risk assessments and other such tools and processes: it’s been made so complicated.

And here is the key, I believe: large (and small) institutions (and therefore also the undoubtedly clever and committed people who work in them) can get so tied up in implementing and tweaking the latest processes, that they can overlook the objective – namely independent living. And to get back to the simplicity notion, at the end of the day what independent living is about is autonomy, about being in charge of our own lives, making our own decisions, and yes – taking our own risks. And this means in all areas of our lives, not just the ‘care’ element.

So how can the independent living concept flower and thrive again, in an austerity landscape that seems rather barren and inhospitable? Many of our organisations have, perhaps, lost their way (5), or become enmeshed in the care processes, or even disappeared, having lost the struggle for survival. Budgets are squeezed tighter and tighter, and eligibility criteria toughened.

Is there any good news? Well yes, I believe so.

The terrific mobilisation of disabled people in response to benefit changes and the impact of austerity is a positive development, as illustrated by the recent success of the WOW petition campaigners (6), and the ‘stay of execution’ for the Independent Living Fund ,(7) courtesy of the five ILF recipients and their legal teams who cannot be thanked enough. Prospective United Nations attention to inequalities in the UK under the Convention (8) is also welcome, as indeed is this blog site.

So: what hope for independent living? I think maybe more hope than there was even just a few months ago. If recent successes can be built upon, if the Disability Manifesto (9) can be developed to fulfil its promise, if the government’s Independent Living Strategy (10) can have life breathed into it, if this blog can prompt discussion and options, and if we can work together with allies then surely we’ll have all the tools we need to do the job?

About the author

Having set up and run Breakthrough UK Ltd, and before that having been a founding member of the Greater Manchester Coalition of Disabled People Lorraine Gradwell MBE has been centrally involved in disabled people’s self-organisation. Lorraine’s experience and activities range from being on several governmental committees to joining the picket lines. Semi – retired, she spends some of her time now as a policy advisor and blogger.

References

#1 http://www.independentliving.org/docs3/zukas.html

#2 http://www.breakthrough-uk.co.uk/AboutUs/social_model

#3 http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-principles.pdf

#4 http://www.dcil.org.uk/2012/ddcil-annual-review-2011-2012/the-seven-needs-for-independentliving

#5 http://www.breakthrough-uk.co.uk/OurServices/policy/blog/ulos

#6 http://www.mirror.co.uk/news/uk-news/war-welfare-petition-100000-sign-2870513

#7 http://www.bbc.co.uk/news/uk-politics-24834558

#8 http://www.equalityhumanrights.com/human-rights/human-rights-practical-guidance/guidancefrom-

the-commission/a-guide-to-the-un-disability-convention/

#9 http://dpac.uk.net/2013/09/uk-disabled-peoples-reclaiming-our-futures-manifesto/

#10 http://odi.dwp.gov.uk/docs/wor/ind/ilr-executive-report.pdf

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One thought on “Independent living – what exactly is it?

  1. Great to have started this blog! ENIL can only agree that the objective of IL is overlooked. Definitions are highjacked – living in an institutions with a personal assistat can be called IL when the person had no choice where to live, who to live with or on whom was to assistent in daily life tasks. If Article 19 of the UNCRPD was respected many disabled people would live so much better lives! Jamie Bolling – Director ENIL – European Network on Independent Living

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