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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3 thoughts on “Striving: a right, a responsibility and a risk

  1. “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.” A well written and thought provoking blog by Jan, which personally resonates with me both for myself and as an parent advocate of my three disabled children. It’s the ultimate double-bind, isn’t it? The special needs, deficit-focused, medical model systems that require evidence and proof of inability, inevitably results in lowered expectations. You are forced to enter a discourse of “playing the system” to receive your entitlements. I’ve tried to protect my children (who are now young adults) from the damaging effects of this process, but it has always bothered me. At least two of them are strivers, who want to participate and contribute – but both have still had to deal not only with the special needs system but mainstreamed, casualised discrimination in education, employment and goods and services. One has become a disability activist – so another generation picks up and joins that particular narrative. Special needs and casual discrimination – It really is a double whammy, and we need to recognise this when aspiring to striving.

  2. Great post – thanks Jan! It made me think of a comment in some research I recently read on decision making – a person from a (Canadian) family support and advocacy agency said:

    ‘to be eligible for formal support such as respite families must “show all their needs and deficits…” She remarks further on the paradoxical nature of supporting people with disabilities and their families wherein: “We’re supposed to be pumping them up, talking to them about how they can be all they want to be and they can have authenticity …. and they can have citizenship and they should have these things and they should have all this stuff but first you gotta make them all pathetic”. To this line of thinking, a focus group participant from a community agency providing support to adults with extreme behaviors adds dryly: “you gotta bleed first. You gotta suffer first”.’

    http://www.lco-cdo.org/capacity-guardianship-commissioned-paper-lashewicz.pdf

  3. Pingback: In memory of Jan Sutton, a ‘striver’ | Making rights make sense

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