Striving: a right, a responsibility and a risk

By Jan Sutton

On his blog, Making Rights Make Sense on 25th November 2013, Neil Crowther wrote about the need for welfare reform to involve trust and investment in people, in order for society to gain both economically and socially. He talked about the need for the welfare state to focus on supporting ‘strivers’. I want to use this blog to look further at the idea of disabled people ‘striving’.

As Neil said, we all strive, it is a part of being human.

“Striving is the ordinary human condition.  We strive to survive each day.  We strive to love and be loved, to have good relationships, to be recognised for our talents and abilities, to do things we enjoy and to feel good. We each – whatever our situation – seek out opportunities to achieve states of being which match out aspirations such as just managing to go for a walk without having to look over our shoulders for the benefit fraud inspector.  ‘Striving’ in this sense is synonymous with human dignity.”

This really struck a chord with me, striving is a part of being human, it is synonymous with human dignity. Therefore, to feel truly human, truly dignified and truly part of society must we not, in some sense, be striving? And yet, for those of us who are ill and/or disabled to strive is becoming increasingly risky. As Neil points out, the idea that the disability is synonymous with inability has become totally embedded in our society. Disabled people are objects of compassion, and only this compassion (or is it a pity?) seems to justify us receiving the support that we need to survive. I think it’s not unreasonable to say that many of us (disabled people) are really frightened of not receiving enough support. It may sound melodramatic but, for some of us, in these times of austerity the presence, or absence, of the support we need really is a matter of life and death (see my blog post).

So “We must demonstrate our inability to be productive in order to be eligible for critically important support” (as Neil says in his blog). Disabled people have had to learn to ‘sell’ our inabilities, our ‘can’t do’s’, in order to get the basic level of support that we need to survive. We learn that focusing on our ‘can’t do’s’ is the only way to get the benefit we need to facilitate our lives. Over and over we fill in forms measuring the extent of our deficits, analysing and describing what we can’t do. We must perform this ritual to get the benefit we need to pay for the adaptation we need in order to function, or to get the social work assistant to give us enough points during our assessment so that we may have support to go to the toilet, or to shower. It’s all about point scoring. It’s all about helping the health professionals, or the benefits assessor’s, to tick the right boxes to get the right number of points to get the level of support that we need. These needs are so utterly fundamental that we have to get it right, we have to learn to sell our ‘can’t do’s’ well so that we can get the support that we absolutely need. We all know that our aspirations, our skills, our experience are not to be included. If we want to get the support that we need to function, we’ve got to play the game. And, frankly, it’s just too risky not to.

I usually have little problem in getting the state benefits I’m entitled to. I’m ill enough and disabled enough (with a handy medical diagnosis that ticks all the boxes) that the fact that I can’t work is never questioned. For me, the difficulty lies in getting the basic support that I need to function. The truth is that every time I am assessed for Continuing Care funding (for support with carrying out daily tasks such as going to the toilet and getting dressed) I am warned that I am borderline and that any improvement in my condition may lead to a reduction in the level of care that I receive. As the post on my blog shows, getting the level of support that I receive now was a hard, and unbelievably frightening, fight. Like so many others in my position, now that I have secured the level of support that I need, I don’t want to do anything that will threaten this. And so I have learnt to only talk about what I can’t do; I have learnt not to mention my skills, my experience and my abilities. I have learnt not to mention my dreams, my ambitions and my intentions. More than that, I try to make sure that those who assess me have no idea that these dreams aspiration and intentions even exist. But in doing so, I wonder, am I negating my humanity, my dignity, and my self-worth? Have I taken on society’s narrative that disability is synonymous with inability?

And then don’t we all lose? People like me lose because we lose the sense of dignity that comes from striving and achieving.  We lose the sense of self-worth and identity that is experienced by contributing to society. And society loses the social and economic benefits of our contribution. As Neil points out, if we move towards welfare policy that embraces an opportunity infrastructure, and focuses on investing in people then Britain as a whole stands to gain both socially and economically. Disabled people need and want to be part of a more inclusive society. In these times of austerity, we want to be part of the solution, we want to be involved in rebuilding our economy.

So, I believe that it’s time for us to acknowledge that, by playing the game we need to play in order to get enough support to survive, we participate in the narrative that disability is synonymous with inability. I believe it’s time for us to help society to write a different story. We need to start focusing on what we can do even while the welfare state is still measuring what we can’t do. We need to acknowledge that we have both a right, and a responsibility, to strive. It’s time for us to recognise and value our ambitions and dreams, whether they are related to family life, social involvement or some aspect of work. It’s time for us to speak of these ambitions and dreams too. It time for us to include the language of aspiration in our stories.

I don’t want to leave this as an empty and vague statement. With this in mind, I choose to out myself as a ‘striver’. I strive to maintain close relationships with my loved ones by spending a lot of time on the phone. I strive to increase the movement in my left hand by doing physiotherapy. I strive to participate in society, to contribute in some way, by doing some data entry for the local community owned farm, Norwich Farmshare. Often, for days, weeks, or months all I can focus on is managing to go to the toilet and sitting up to eat meals. But sometimes I achieve what I am striving for. Striving is a way of maintaining both my dignity and my self-worth.

To strive is absolutely both a right and a responsibility. But unfortunately, it is also a very real risk. I hope we can start taking tentative steps toward transforming that risk into a fruitful reward, for ourselves, and for society.

About the author

You can find out more about Jan Sutton here

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Personalisation must always be the servant of independent living

By Neil Crowther

Independent living is not another word for social care or just about public services or benefits.  It is, as the phrase suggests, about the capacity to conduct ones life as one chooses – to be, as the title of this blog says ‘the author of ones own life.’  As a project it demands nothing short of societal transformation – re-directing legal, economic, political and social power to disabled people.  This requires legal and institutional reform, access to information and advice, the creation of infrastructure, technological innovation, accessibility of goods and services and changes in public opinion, attitudes and values.

‘Personalisation’ is an important part of this project, but it is only one means to its end.  It does not alone address or convey the breadth and complexity of what’s involved in promoting independent living.  Alone, it is too confined to the relationship between individuals and providers of services. Having choice and control over services does not necessarily equate to have choice and control over ones life, nor does the personalisation agenda clearly speak to the enormous growing gulf between those requiring support and those provided it by the State. Failing to connect ‘personalisation’ to ‘independent living’ is akin to divorcing the promotion of diversity from the pursuit of equality.  It simply loses context and direction.

My comments here are not designed to contribute to what Martin Routledge has called ‘the failure narrative’ regarding personalisation. Rather they seek to help find a way to rediscover what is (and is not) valuable about the way personalisation has or is being implemented and to avoid personalisation being positioned as a fig-leaf for further cuts. It is about rebooting the navigation system.   Without doing so we risk allowing personalisation to be cut free of its mooring as Jenny Morris recently warned, and placing ourselves in a position of defending the indefensible: the illusion of progress, or worse still regression under its banner.

Just as the floods are destroying the physical infrastructure – housing, roads, trainlines, bridges – that enable people to lead their lives, so the floodwaters of austerity are sweeping away the infrastructure – social security, public services, receptive public attitudes – that sustains independent living.

Though I stand by previous posts that austerity provides opportunities as well as threats, in practice such cuts are not only limiting the overall availability of support, they are undermining choice and control in relation to that support which continues to be funded.  I have spoken to disabled people who say that such is the challenge of securing any support from their local council that we will take whatever they can.   What people are expressing is their sense of powerlessness – of being ‘done to’ and of having no real say.  It is the stuff of Oliver Twist –  ‘please Sir may I have some more’ – with rationed support ‘gifted’ not provided as a right.  This is of course precisely what the idea of independent living – and personalisation as a means to that end – sets out to challenge and address. But the fact that austerity diminishes not only the availability of support, but the extent to which people are, or feel that they are, able to exert control also reminds us that real power can only be exercised where the overall resources committed to public service support are adequate.

Related to this, I have also heard disabled people and others express a view that choice and control is relevant only once basic needs are met.  I fear this perception may be borne of a misunderstanding regarding some of the examples – such as that of a couple using a direct payment to purchase a season ticket so that someone could support the disabled husband to go see his football team – that advocates of personalisation have employed to inspire others.  The solution in this case may be imaginative and wildly different from what people are used to, but it was simply addressing the very basic human need of the wife – caring full time for her husband – to have a rest.  Had they continued to achieve this by him attending a day centre one afternoon a week (something which he hated and which left his wife feeling racked with guilt) would anyone view this as a luxury?  

Moreover, control (or fear of losing control) is typically a high priority concern for people in respect of matters such as who comes in and out of their home, helps them to wash and go to the toilet, take medication, get dressed and undressed, handle their money and personal affairs, or determine what time to get up or to go to bed.  The reason people may accept a loss of control in relation to such ‘basic needs’ is that the consequences of their not being met are so dire.  It is the point at which people are in the most vulnerable situation and at their least powerful. This is also why personalisation at the level of basic needs has the greatest potential to restore power to disabled people.  As Maslow’s hierarchy of needs (below) reminds us, without control over these so called ‘basics’ other aspirations – such as a good family life, social relationships, employment and so on are frustrated or rendered impossible.  

Advocates of personalisation must therefore challenge spending cuts not only on grounds that too few people are receiving support, but equally because spending cuts are presently disempowering those who do, robbing them of even the most basic foundational forms of dignity and agency.

Most fundamentally of all, we must never forget that independent living is a right, not a luxury.  When the UK government, with cross Party support (and urgency) ratified the United Nations Convention on the Rights of Persons with Disabilities in 2009 – with the UK already deep in recession and public spending cuts forecast – it undertook, in good faith, to implement the Convention including Article 19 – living independently and being included in the community.  Article 19 demands that disabled people can exercise self-determination over where and with who they live and that they should enjoy inclusion and full participation in community life.  The government undertook to ensure conformity of all laws, policy and programmes and the ‘progressive realisation’ of the right – that is, securing over time, albeit in clear milestones, enjoyment of the right in practice through the dedication of resources.

For personalisation to regain credibility and be a force for good, it must be clearly restated that it is the servant of independent living, the impact of spending cuts must be highlighted and challenged, and the higher ground of Maslow’s hierarchy must once again be our mission.