Vulnerability?!

As Liz Sayce from Disability UK stated this week: "So we should reject the language of ‘vulnerability’ and talk instead about support for independent living and opportunity to use our talents to contribute to our communities."

I do think that it is when disabled people are described as vulnerable they are most likely to be thought of as passive receivers. I do think all human beings are vulnerable.  While I do not want to labour the veracity of the label from a physical perspective, I do want to think about the impact of the term. As humans we all have strengths and weaknesses, because we are all different, and our physical robustness varies from person to person. Equally, personal resilience fluctuates for each individual over time - weeks, days, hours. Therefore, using vulnerable as a euphemism to imply lack of strength or diminished capacity has no real meaning in terms of who’s in or who’s out. In fact, I feel, it pushes individuals into an ‘other’ category – other than human? It's ironic that the impact of a word can be so dehumanising, because it’s being open and unguarded that helps us show trust and connect to others. I'm vulnerable when I share my story, publish a piece, talk about my ideas or say 'I love you'. To me, vulnerability allows sharing, but it happens in relationships – within the intimacy and mutuality of the exchange. Choosing to be vulnerable means admitting a need for interdependence, and opening ourselves to possible awkwardness or rejection. In short, it is when we choose to lower our defences and open our hearts that we are at our most authentic - possibly at our most beautiful (Brown, 2012).

Yet sadly, for many ‘vulnerable’ has become a pejorative term. Probably because it's being misused to describe whole groups of individuals that are then perceived as ‘needy’, ‘lacking’ or ‘deficient’. They then become ‘the people we talk for’ or those we ‘make decisions about’, easily dismissed and ignored. The unchallenged assumption is that those labelled as vulnerable need looking after - they have an unreliable voice. Call it bias, prejudice or ignorance, using even the most euphemistic terms can imply the whole group is inferior. Particularly where the assumption underneath is disempowering and belittling, as it adds weight to other stereotypes such as pathetic, evil, scroungers (Chapman, 2011). If left unchallenged the stereotypes that we’re so often unaware of reinforce ideas of dependence and immaturity that somehow disqualify certain people from participation. As if there is an alternative route, a special section, until we're deemed less vulnerable?

It is neither empowering nor liberating to name a group characteristic as a weakness. I think using vulnerable covers the often-unacknowledged belief that disabled people need to be cured - or cared for. Thereby named deficient their voice can be ignored, and they can be told what to do? What is implied is far more dangerous than the word itself. The uncritical use of the word ‘vulnerable’ implies that some of us are unable to contribute to important conversations about the world - and its future. It's the association with inferiority that harms, and misusing words at work has an impact on relationships within our organisation and institutions. In the media this goes further, it has a negative impact on people’s attitudes, and affects thinking, language, and behaviour. In a wider context within our communities these negative ideas skew the story we tell about our neighbours: the tale we accept about disabled people’s worth to the society we live in and their contribution a better future.

Disabled people are complete beings in the present. But being regarded as vulnerable denies our communities a reality where disabled people share the task of imagining a positive future – one that is only possible from a hopeful present. While work is an important issue, it’s also imperative for us all to contribute to public debate and to community conversations in positive ways. Life outside work is precious, it’s a time to enjoy connection, to be happy, creative, playful, loving, caring, generous... there is lots going on here that needs thinking about. I'm not saying market conversation about is not important, just not all important! There are others, community and state conversations for example ground us to locality and place us within the world. It's not a binary option either, whether three-way or more, all the difference areas in our lives need attention for us to be strong, resilient and flourish. 



Works Cited
Brown, B. C. (2012). Dearing greatly: How the courage to be vulnerable transforms the way we live, love, parent, and lead. London: Pengiun Books Ltd.
Chapman, L. (2011). A Different Perspective on Disability Equality, a practical handbook. Huddersfield: EQT Publishing.

More counting fish...

At a time where the very existence of disabled people is being thrown around as a financial question, I rage. I stand by a previous statement: At a time of major cutbacks, services are being asked to do even more with less.  Ironically this has led to counting fish more assiduously, while still ignoring [disabled] people’s potential to add to the fishing. 

I am so angry right now, but there are a number of thoughts I'd like to share, they are somewhat muddled and confused, because of the complexity of so many arguments linked to what is being said across the media and our networks… I believe that disabled people are entirely capable of adding their share to the well-being of this country - and indeed the world. We are sisters, brothers, mothers, fathers, uncles, aunties, friends, carers, partners, colleagues, trustees etc... There is not a form of human endeavour that isn't enriched by our presence and therefore our contribution. Truth is, also, that disabled people face significant barriers, inequality of opportunity, lack of consideration and in the worst circumstances hate crime. I consider myself hugely privileged, but I am sickened by the idea that the financial support we need is being used as a political football. That somehow we've become a cost not a gift to the shared capacity and the beautiful variety of the human form. Surely it's between us all that strength exists, in the mutuality of our exchanges that there is gain – the worth that money just can't quantify. 

I may be odd, but I think a full life is about a lot more than money. Yes, in the west the individualism that fuels market price now seems to dominate both state debate and community conversation. While economic growth is lauded, human development requires more to sustain our humanity: for example, the ethical commitment and environmental considerations that will help us redress the inequality threatening our lives.  If we calculate human worth by financial units we are diminishing people's existence to the ‘paid for’. There is far more to our community endeavour and civic engagement than what has a price. The care we extend to our friends, the security we offer to all children, the safety of being known, the joy of sharing connection - keep us well and happy. You cannot put a price on love, passion or respect - therefore arguments about amounts of money are somewhat simplifying the more significant issues of social justice and human rights.

I am proud to live in a country that supports people in times of need. To my mind offering support, paid and unpaid, is part of what defines our shared humanity. I enjoy, when I can, paying into a pot that gives others a route to well-being – it’s a small demonstration of civic empathy. However, the divide needs to be equitable! This means that people in receipt of the most hardship get the most immediate help and the most understanding consideration. Well-being is defined by more than health. Getting through the day and having a job reduces our existence to survival - not living. For those whose basic needs are barely being met more needs to be done - not less. Because well-being tends to prevent critical illness - not mere health – long-term aspiration need cultivating for people to flourish. I can have my needs met and wish to die in a society that doesn't strive to create a more equal place for me in education,  employment, leisure, community activity and civic engagement- a huge agenda is needed to ensure we thrive together as a human family. The cost is important, but not at the price of what has worth and upholds our values.

Given the inequity disabled people face in our localities we need to consider acting more justly – upholding human rights. For me being bathed, dressed and fed are the very least I need in order to look forward to a day of meaning and engagement. Depriving the most threatened of the minimum is inhuman, and in years to come the words we’ve heard recently will articulate the shame of our times. 

More worryingly there is a long-term cost to our relationships. I do worry that this focus on cost has diminished our appreciation of human connection. Putting disabled people in the spotlight, as scroungers or victims, has pushed us into a 'them' camp. As the other, I feel less worthy, less proud, less employable and less loveable. The headlines may not be directed at the most privileged disabled people on the block, but boy do the words challenge dignity, pride and sanity. I have felt vilified, picked on, ashamed, degraded and rubbished this week. I feel scared to go out, and glad for the safe spaces in which I am wanted by others.  Waking up to the message that my life is expendable because of its cost is deeply challenging my existence!! 

I know that we can all contribute greatly to the shared abundance of human existence. But to do so at the very least we need people in the public eye to acknowledge that the worth as a nation is demonstrated by its capacity to demonstrate CARE - NOT TO COUNT.

Unconscious bias: foot-in-mouth syndrome

Unconscious bias: foot-in-mouth syndrome

We've all been there!! Open mouth, utter a nonsense, engage head … then redden with shame!! I was in a meeting recently when the breath was knocked out of me when someone expressed their distaste for disabled people as a group. Sadly I was too slow, it's now weeks later, I'm at last able to express a [vaguely] articulate response. At the time I was silenced by the shock and anger I felt hearing what I am pretty sure was an-off-the cuff remark. I so wish I'd said something witty, charming and insightful, to challenge with respect a jibe that flew across the room to hit me between the eyes! What has stayed with me is that nobody else seemed to notice… It wasn't the way it was phrased but the underlying assumption that cut deep. The thinking was clear: disabled people deserve no special consideration. The unsaid belief was that everybody gets ill, so disabled people should "get over it".

Thanks to my familiarity with a stereotype activity in training, I have come to recognise the labels associated with disablism. When asked what labels are used to describe disabled people, participants often say:  brave, scroungers, scary, malingerers, asexual, expensive or objects of pity. This practitioner survey has changed over time. The descriptors vary with the ferocity of debate and the negativity contained within the ideas aired in the media [newspapers, radio, television and film]. Many years ago evil, burden and invisible came up most often; these days scroungers, welfare cheats and burdens of the state come up with soul destroying regularity. It's a powerful activity, but difficult if you feel at the receiving end.

The moment did make me wonder how many of us would be able to pinpoint the disablism in common language, even when it looms large in a public forum disguised as a personal remark? To be truthful, I'm not sure I'd be so sensitive to ideas disguising religious intolerance and homophobia. At least with disability issues it’s personal. For example, I've heard so many variations on ‘you’re rubbish” – I quite literally hyper sensitive. Negative prejudice is often hidden, the euphemism 'It's ok for you' is often used to express: you're on loads of benefits, you get extra help, you have nothing better to do, you need a carer, you should do something worthwhile, or your work is not worth paying for.  I've heard them all, and much too often! On one memorable occasion it was a disability champion that pointed out that I had parked my car badly; and they didn't even flinch when I said I wasn't my car?!

While evidence suggest that negative storytelling hurts, it also suggest we don't have control mindful over it - our hearts drive our heads it seems. Which is probably why too few of us can contradict assertively the assumptions that have an impact on our behaviour. Sadly, we are still not fluent enough to un-think the insidious impact of negative storytelling. To name disablism is difficult, the stereotypes that illustrate its character are indistinct to many. Yet many can put into words our society's [wrong] story about disabled people. So why can we not stop believing the untruths that fuel hate crime and victimisation. Evidence in this area suggests that most negative prejudice (and positive for that matter) happens before we think, it is only afterwards that we find ways to explain our actions. However, the more knowledgeable we are with a group’s success, the more fluent we become with their ideas. By understanding the experience of specific group, the relationships, the less likely were are to act with bias (Gladwell, 2008).

To my mind there are at least two areas of confusion in relation to character of disablism. The first is that disability and illness are often seen as the same thing; and secondly that disability is a personal problem therefore doesn't warrant a political stance. In the first assumption, where disability is equated to illness, an individual response kicks in – care or cure have for a long time been seen as solutions. I'm not denying illness is part of it for many, but as I’ll argue, there's a lot more to consider! Many people use impairment and disability interchangeably, but as an equality specialist I do not, I distinguish between the two. While I understand that for many disabled people living with a condition or difference can be a painful experience, it’s one that can vary hugely from person to person. For me, illness is very different from impairment because it's transitory [in theory], and therefore recovery is often possible [in practice]. Not for everyone though, admittedly for many the difference is in the theory – but not in the practice! I've had 3 impairments for many years, they've not been particularly painful until now. I experience them as part of my unique existence. However, over the years two of them have become increasingly painful. The experience has changed greatly, the level of pain is high, which makes it difficult to move and is exhausting. This often means that my outward focus can be limited, because my energy is used up and it's hard to pay attention to what's going on around me.  From a personal point of view, I do not expect sympathy as an entitlement. It’s empathy and consideration that is hugely appreciated!! It's a tenuous notion, I know, but I don't want chocolate or flowers. I'm not ill, but equally I feel denigrated when my experience is brushed off as typical. I would like those who are around me to appreciate I'll never get better, but see my strengths and abilities as of worth. The personal consideration we extend to others, I think, defines our caring nature - and ultimately our ability to honour each other's Human Rights.

The second issue is one of group voice, and the size and scale of the inequality that disabled people face like many other marginalised groups. According to the DWP, disabled people are far more likely to live in poverty, be unemployed, not to have had access to further education, to have little choice or control, enjoy leisure activities or participate in civic engagement. The scale is quite stupefying: ‘Around a third of disabled people experience difficulties related to their impairment in accessing public, commercial and leisure goods and services’ (Office of Disability Issues).

Now while consideration for individual experience could be conceived as a personal choice. At work I think it denotes an ethical intentionality fundamental to best practice. Openly declaring a lack of acknowledgement for the injustice 1 in 7 people face - is an organisational failure. I would suggest that strategic conversation needs to address the growing inequality in our world if it is to address human rights. This would mean becoming attuned to the character of the discrimination disabled people face. For disability equality this would mean understanding the negative prejudice fuelling disablism as similar to racism, sexism, homophobia, ageism and many more. Prejudice based on unchallenged belief only adds to the pain of people's existence. It is in addition to the oppression the whole group face.  Philosophically, addressing it as merely a personal issue only serves magnifying the problem,  ‘intelligent social policy may well aim to change the world, rather than compensate the disabled person’ (Wolff, 2011, p. 153).

While learning about facts may not immediately interrupt 'foot-in-mouth' syndrome, I do think it's a start! Our fluency can only improve if we highlight and honour the voice of disabled people and the thinking of their movement. Agency has never been helped by telling people how to change. It is my greatest hope that it won’t be too long before those around me will look disapproving when someone declares their lack of sympathy for any group in public.

Works Cited

Gladwell, M. (2008). Blink - The Power of Thinking Without Thinking. London: Penguin Books.

Office of Disasbility Issues. (2012, 2nd quarter). Disability facts and figures. (D. f. Pensions, Producer) Retrieved May 28, 2013, from Department for Work and Pensions: http://odi.dwp.gov.uk/disability-statistics-and-research/disability-facts-and-figures.php#imp

Wolff, J. (2011). Ethics and public policy: a philosophical inquiry . Oxon: Routledge.