Home > Uncategorized > I don’t want Social Care thanks!

I don’t want Social Care thanks!

Challenging The dominant social care conversation for Independent Living

I don’t want Social Care thanks!

The purpose of this blog is an attempt to start to rebalance the current focus of policy makers, the media, and others away from Adult Social Care (ASC) to a focus on Independent Living. It is felt that ASC is the dominant focus and asa result completely pushed aside what we Disabled People are fighting for which is indeed something very different. There is an assumption that ASC & IL are the same thing. We could argue that many of the principles of Independent Living have come out of our efforts to move away from being cared for. 

For over 30 years we have experienced and shown that Independent Living is a significant experience in which we can live our lives as equal citizens. The reason for writing this piece is that the values and principles of Independent Living are critically under threat while discussions around ASC are so dominant and in particular they seem to be slipping further from our reality since the closure of the ILF and with growing evidence of the poor implementation of the Care Act. 

 Of course I want and need support and resources to live my life but these are not found in receiving a service that doesn’t meet my needs or that doesn’t reflect my aspirations to live a full and equal life. It can be argued care has an emotional attachment, a human need we all give & share. Independent Living is a Human Right that needs to be supported, respected and protected through policy and practices which promote equality, dignity, choice and control.

In saying what the difference is between ASC and Independent Living, a good starting point is to look at the different language used. The real importance to this is that behind each word is a real lived experience that has real attainable meaning. For example the idea of saying Independent Living is about freedom could be argued as a massive unmeasurable concept. However in the context of IL the individual experiencing having control over an aspect of our life such as getting up, when you want & how you want, gives that concept a real simple meaning, particularly if you had never had that control in the past. This type of freedom is and should be a day to day lived experience for all Disabled People as equal to our non disabled peers. 

Unpacking some of the principles (I dont confess that this is complete, more a starting point) might help us see the wood for the trees and I hope help those who’s minds and practices we need to change; that my/our worries and concerns since the ilf was closed, is not around social care but the right to Independent Living.  Independent Living might be seen as complex and different to the individual, but it is not complicated. 

Although Independent Living can mean different things to each individual there is commonality, and clarity around the principle, Independent Living is very simple. It is built on our experience and reflects better than ASC our expectations and aspirations to lead full and active, valuable lives. Our experiences have helped to shape many social policies and systems such as the use of direct payments.  Significantly the principles of Independent Living are a Human Right. It applies inclusive of age, impairment, condition, gender, life experience, diagnosis, chosen identity or imposed label.  

This conversation is trying to be very real and based upon our lived experience and application. I’m trying to not be too wordy or use too much jargon. This purpose is trying to be more. inclusive and open up conversation so that the principles and values of Independent Living can be clearly understood and hopefully put back on the agenda and ultimately ptocted in legislation, policy and practice, so we can get on with our lives, which is what we’d love to be doing!

We often use two columns to express the difference between the social model and so this might be useful in showing the differences between ASC and Independent Living and why Independent Living is so important to us and why we are fighting for something different from ASC. It might look a little like this:

You could go on; supporting others in my life, interdependence, purpose as apposed to filling in time or doing normal day to day activity like watching paint dry…
To define Independent Living is sometimes not helpful as it immediately boxes it up and limits its possibility and meaning for each of us who experience it in different ways. Looking at the table above Independent Living arguably doesn’t have too many draw backs, it makes sense and for any of us that have or are living it, it is precious and central to our way of getting on.  

Perhaps the only draw back ( and on any good day you would say is a total advantage) is that you have to know yourself very well, this can lead to an over analyse of things like time & the cost of time on my budget, which nobody else would really have to think about. How long it takes to get dressed or ready or to head to the loo. I’ve also realised that differently from my younger days I think more of the value or cost of every hour. This means I have to plan well to be spontaneous! Yes a contradiction in terms but it can and has to be done if you want a private life whilst needing the support of a pa.  
A different challenge is in the lack of support for Independent Living. For example when your not well you still have to manage your pa’s or when you are recruiting or dealing with employment issues you need that legal brain. You still have to think ahead.Of course recruiting and hr issues require expertise and even legal knowledge and there is very little support for that and it has caught some out only adding to the battle of just getting on with life. It could be argued that disabled people face extra difficulties just to be independent . Independent Living of itself is near enough a full time job on occasions. But it’s worth every bit of effort because it’s freedom! Something that one experienced can never be taken away.

The draw backs are challenges but are not so insurmountable that Independent Living would lead to a conclusion that it doesn’t work or is not worth having. The challenges are created by a lack of resources and support. Independent Living Is more than just merely existing, getting up, going to bed, being fed etc…its about purpose and value to our lives. These few difficulties identified are more about the systems & resources to support Independent Living rather than a problem with Independent Living itself.
ASC & IL are very easily being muddled up as the same thing, both in legislation (we saw how difficult it was to get IL recognised in the care act, the ‘well-being principle’ at least gives us a small flag to use and wave, but we know in practice that this is not being understood as the right to Independent Living. 

Another concern is that ASC in our media is normally just described as being an issue about old people (an ageing population is a phrase used over and over agai) and as result ASC and IL are conflated again. Of course these principles and values are of concern to all people of whatever age and the issues will of course have similarity but equally there will be significant differences. However if these dominant stereotypes go left unchallenged we will see both Social policy around equality & Independent Living slip back as it has already been identified, and so our human rights will be further denied. 

It pushes back, those principles of equality we have fought so hard to get recognised.  Perpetuating the message that social care is only about an ageing population also influences heavily a system that doesn’t meet the needs of young disabled people and disabled people of working age. This is another reason why our battle to have Independent Living has and is so important.  We need to be able to shape our support to live the life that we want and not a life that has to fit into a prescribed system.  The ‘Stay Up Late’ campaign is not over yet

The current conversation that social care ‘in crisis’, is an unhelpful distraction in which, all energies are being focused on addressing that. However I guess it is an opportunity to put across the importance of a non medical model set of principles of IL in the context of our whole lives (so education, housing, adequate income, work, a social life, rights and participation) slip further back.  

The need for some reframing is a critical activity to re-invigorate the passion with which we believe as to the importance of IL. It is needed to try and change the discussion so that our voice as Disabled people is more fairly represented, heard and acted upon…isn’t that how the ILF began? Co production in which disabled people were equal and helped to carve the solutions to our own lives. This reframing must give us the confidence to challenge the dominant focus with the issue that we feel is important and should reflect our lived experience. I would argue that our experience of Independent Living when resourced and supported and could hold some solutions for many of the challenges faced by ASC.

I’m not trying to be too academic in this paper but endeavouring to help my/our understanding of what makes Independent Living really different in the hope that those that don’t or cant see the difference take on our concern and realise we are not going away or giving up on this. In some ways I’m not trying to over analyse or apply a critical theory, argue and counter argument, others do that far better than I. 

 The conversation & debate for Independent Living must be re-ignited, the dominant language and focus has to be challenged. We can’t let these principles slip away just because someone else has decided the focus should now be about ASC. We need to lead and shape the discussion around our own lives , its not enough just be allowed in to speak and fit in to a different discussion that doesn’t reflect fully our concerns.

Categories: Uncategorized
  1. Soph
    April 28, 2017 at 17:28

    blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Xx

    Sent from Yahoo Mail for iPad

    • April 28, 2017 at 20:22

      Its all code soph, please post yer comment again x

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