Labour’s election manifesto talks about disabled people living independently, but only relates it in terms of those who appear capable of working with support, framing the issue in terms of welfare. All the political parties, and indeed the majority of welfare activists, appear to divide disabled people into two main groups, depending on whether they need ‘social care’ or not.
Those who do not need social care are deemed as capable beings, whether they can work or need ‘the security of the welfare state’, that assumes their benefits are all they require to be satisfied with life. Those who are seen as needing social care are for the most part regarded as the property of their families, under the guise of ‘carers’. In this context, the political focus seems to be about pleasing the family, not the individual, who needs protecting as a vulnerable member of society.
The social care agenda is fixated on older people, and looking after people who are regarded as incapable of thinking for themselves. While successive governments in recent years have talked about offering ‘choice and control’, the financial lure of integrating social care into its big brother of health is likely to reverse anything that may have been achieved. While everyone appears to be against 15 minute calls, the alternative could be task-oriented calls that are not only shorter but provides users with less control as the system is swamped with health related goals.
Within the group of disabled people deemed incapable of personhood by needing social care, is the traditional independent living movement. Independent Living has remained for the most part a privilege of the lucky few who by circumstances and opportunity, have had the attitudes needed to secure the funding they have required to break the mould and make a contribution to society when society, including politicians and welfare activists, does not expect them to be anything more than unemployable ‘burdens’ in the name of compassion and fairness.
Many old guard independent living activists have incorrectly focused on the funding of their care and support as the measure of living independently. While care and support, particularly for those with high support needs, is a crucial component, even by the movement’s own understanding, it is just one of 12 needs, and even then, I believe it misses the key component to independent living, and that is attitude. The fated Independent Living Fund may provide funding to high cost support packages, but I doubt if a fraction of its 19000 users are actually enjoying true and meaningful independent living.
Real independent living is not something that can be bought, but it is something that can be taught. It is not just about raising the expectations of disabled individuals, but also the expectations of their families, friends and the professionals that work with them. Too many disabled people are denied the taste of independent living simply because of the attitudes of those around them, regardless of their wealth or how many hours a week care and support they receive.
Independent Living is not about where you live or if you employ your own support staff, nor are there any socially recognised norms that shows someone is living independently. Instead, true and meaningful independent living is about a belief any person has that they are able to take control and responsibility in their lives in the same way as their peers, including the same restrictions, and interact with society as an equal citizen. It can be about being determined to achieve the impossible, or simply plodding along happily, the possibilities are only limited by our imaginations.
It is time politicians, activists, disabled people, families and others revisited their understanding of independent living, to see how it can be achieved for a 21st century society. Keeping independent living framed as just a funding issue is not helping anyone, especially as the priorities of social care are changing once again, away from choice and control. Instead, independent living is central to how all sick and disabled people are woven into the fabric of every aspect of society, and it needs a new generation of independent living activists and leaders to take it forward.