Even a stopped clock is right twice a day
Toward the end of Thatcher’s 3rd term as prime minster (when she wasn’t busy laying waste to whole industries and sectors, impoverishing whole communities and blighting the lives of generations to come) her government in 1988 introduced the Independent Living Fund (ILF). Designed as a measure to provide support for disabled people with high and/or complex support needs, the fund was a new departure in Britain, with its focus on people’s aspirations rather than their needs. Put simply, it is the difference between asking someone ‘How do you want to live your life?’ and asking them ‘What can you not do?’.
The term ‘Independent Living’ and the movement that defined it can be traced back to Ed Roberts. A student during the 1960s at the University of California in Berkeley, Roberts was inspired by the civil rights movement to fulfil his wish to attend and fully take part in university life. Roberts married the political with the practical, recognizing that both barriers would need to be addressed if he was going to have any chance of a shared experience with his fellow students.
Roberts convinced the University to allow him to use an empty hospital block as a dormitory to house his 225-kilogram ‘iron lung’. The pressure chambers were used at the time to treat Roberts’ condition, polio. The focus on using the word dormitory to describe his living space rather than using the word hospital or ward was at the heart of what drove Ed Roberts. His focus on terminology and ideas such as prioritizing support over treatment and dormitory over hospital ward were political acts.
At a time when new political identities were being forged and demands being placed on wider society to be inclusive of all identities within it, disabled people were still very much seen as ‘broken’: either needing fixing to return to society or to be isolated from it. Their identities demanded more than just a place; they needed a context, too – the same as everybody else’s did. Independent Living, with its new political focus and practical interventions – be it people, equipment or systems – gave people a sense of direction.
Between its introduction in 1988 and its closure on 30 June 2015, the Independent Living Fund took users a long way toward the ideals of Ed Roberts. Supporting disabled people – who were easily and previously written off – to become actors, writers, musicians and CEOs. By carrying out the everyday mundane tasks everyone else does without a moment’s hesitation – by supporting people getting out of bed, washing, dressing and eating, and leaving the house – ILF users could focus more on going swimming, meeting friends, maybe even having some sort of family life. The ILF changed the lives of the people who used it and became an example of how things could work differently for people just by changing the questions we asked.
When the fund closed, it ended a 4-year campaign by users, campaign groups, disabled people’s organizations and wider activist networks. A campaign which saw: 2 legal challenges, 1 legal victory, 1 UN investigation into the British government’s treatment of disabled people’s rights, 1 attempted occupation camp at Westminster Abbey by disabled people, and 1 attempt to storm the House of Commons’ floor during PMQs (Prime Minister’s Questions) by disabled people.
The government’s stock response is that local councils will go on to provide support and ‘people’s needs will continue to be met.’ In 2015 the language Ed Roberts and his activist group fought so hard to confront was being rammed back down the throats of the very people who were the living example of aspiration over need. The fact that ILF user money is to be given to councils for a few months while the media flurry dies down doesn’t disguise the fact that once the story becomes fish and chip paper the fund will quietly die. Added to this is that the BBC is reporting that more than half the councils are taking the money for ILF user support and spending it on other priorities. As of yet we haven’t identified what these priorities are. Who knows, maybe parking, maybe fact-finding trips, maybe biscuits. But for the ILF users whose support is being taken away, it won’t really matter what the money is spent on, will it?
ILF overhead cost 2% vs Councils overhead cost 16%
About 4 in 10 people who need support get any at all. This doesn’t actually mean that they get the support they need. The average ILF user gets just over £300 ($470) per week and budgets supporting disabled people will drop 33% between 2010 and 2020. Additionally, there is an average increase of 4% per year in demand for local council disability support.
I’m not good at maths but the bottom line is looking a bit bleak here. If you’re a disabled person dependent on local council to get you up and out in the day, then you’re probably going to be in a very long queue for support. Local council care users play a game called ‘Shit or Sandwich’ as councils reintroduce 15-minute care visits in place of services such as meals on wheels or actual real support during the day. You can’t do both in 15 minutes unless you take your sandwich in with you, probably not advisable.
The closure of the fund represented the death of the idea. The idea that equality was equality and not something where the price was haggled over. The idea that rights don’t come with asterisks denoting financial limit.
Britain, through collective sleep-walking along the path of government narrative, has given up any pretence of talking about independent living with a straight face. If it can’t be wiped or toasted in 15 minutes, rights and equality have no place in Britain’s social-care system.
The desperate act of trying to storm the House of Commons earlier this month was a last-ditch attempt to talk big ideas, like aspiration and rights. Now disabled people know that unless we step up our activism, our solidarity and our tactics, this conversation will be a one-sided affair.
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