Tuesday, 3 February 2015

Being disabled makes you more political. Discuss…

You shall not curse the deaf or put a stumbling block before the blind, but you shall fear your God: I am the Lord.
– Leviticus 19:14

The proposition in the title occurred to me whilst writing an email in reply to a letter I had been sent by a representative of Esther McVey, Minister of State for Employment in the Department for Work and Pensions (DWP); itself in response to an earlier email of mine: prompted, in turn, by the minister herself previously replying with a rather misleading (and some may say smug, or disingenuous) letter, to an initial question – raised by my MP, Nadhim Zahawi, on my behalf – to Tory axeman Iain Duncan Smith, Secretary of State for Work and Pensions: asking about his department’s apparent inability to comply with the Equality Act 2010 – in this case, by failing to provide claimants with email addresses for relevant benefits contacts (e.g. enquiries; support desks); and by failing to provide application forms electronically (e.g. as PDFs), that could be filled in on-screen – in other words, fullfilling their “duty to make reasonable adjustments”: and not just in response to my repeated pleas, as a disabled person (having “a physical… impairment that has a ‘substantial’ and ‘long-term’ negative effect on [my] ability to do normal daily activities”); but which they should have carried out, by law, in advance: anticipating my rather obvious needs.

It seems ludicrous to me, that forty-three years after email came into being – and, as I am fond of saying, “I’ve had the same personal(ized) email address for [over] a quarter of a century” – the Government has not yet “adapted to the demands of modern business and communication”, despite many successive (but not successful) attempts at building large computer systems that would enable them to do so (e.g. Universal Credit). I am not a fan of outsourcing Government services (not that there are many left to outsource): but, in this case, there are a myriad of successful examples out there that could be learned from – even, say, Amazon; or, closer to home, one of the many management consultancies that specialize in benefits administration – without these providers then needing to actually run the service, once it has been developed.

The last time I had to submit a form to the DWP (a couple of years ago), it took me many weeks (at a time when I was very, very ill) to unearth a way of completing it electronically (so that I could copy and paste existing information into it; as well as correct any errors coherently, reiteratively, before sending: and therefore minimize my additional pain) – but at least there was then an established process for doing so: it was just hidden at the centre of several increasingly bureaucratic circles of hell. (I am nothing if not stubborn.) However, not all disabled individuals will have the means, the persistence, or the technical skills (built during a career which I miss to this day) to equip them for such a daunting quest: a route which should, really – considering the target ‘audience’ – be highly visible, straightforward, guided, and trace the path of least resistance.

Such hand-holding; such simplicity; such openness and approachability – both personal, and at the heart of a systematic ease-of-use – are the hallmarks of good, modern, caring customer service; and demonstrate a befitting comprehension of the obstacles that an organization’s users, its ‘customers’, are facing. It should surely, therefore, be the default mode in dealing with people whose lives are already full of intractable mental and physical pain and stress; and, when almost everything (and everyone) today is Internet-enabled and -connected, surely it should also offer alternatives to completing large stacks of paperwork by hand to those who would hurt themselves in doing so; as well as providing contact points other than long telephone queues for those who, like myself, are extremely hard of hearing. In other words: ally the medium of communication – in both directions – to the needs of both parties: the little people, as well as the big, faceless, administrative machines. (And then provide those machines with a face: an individual contact point for all those disabled people, using whatever means makes sense – from carrier pigeon to correspondence in Braille; from text message to textphone; from telephone to Twitter; email to supportive home visit.)

In these austere times, perhaps there is, though – as well as a deficiency of dosh (well, for those not in the top one percent) – also a shortage of the willingness, the sympathy and (even) empathy required to achieve such goals – especially in Government circles? (I don’t just propose all this ‘soft’ stuff to be of service to those on the receiving end, by the way. If the Government improved its systems, its ‘hard’ technology – I was recently told that all evidence from home visits is copied by hand: including bank statements; and that computers are restricted to office use (instead of being left on trains) – and exchanged its reliance on handwritten paperwork for the processing of digital data – it would, in the medium to long term, save billions of pounds: which could not only pay for such up-to-date services; but help improve the lives of those they are supposed to serve – both with the resulting savings; and with a proper analytical basis for their delivery.)

So… the last time I had to submit a form to the DWP, surprisingly, not only did it arrive electronically, it came with a page of instructions, and even an email address for support; as well as one to send the finished article back to (which I did, with several supplementary attachments, as permitted). It was therefore perfectly suited to my requirements – not just because of my condition (although this was, of course, the major reason); but because a great deal of the information required already existed in various digital formats. It wasn’t, by any means, an easy or painless task – but it could have been a lot worse: as I have just discovered. (Sadly, it turns out, once my documents arrived at their destination, they were, I am told, almost certainly printed for storage, rather than kept in their original digital state. However – two years later – as you might have guessed, they cannot be found; not that I think anyone is really looking for them.)

The next time I had to submit a form to the DWP (a month ago, in fact), faced with thirty-four forbidding pages to fill in, this was my reaction:

Completing this form… has caused me more increased pain, exhaustion, and anguish than I have known in a long time – and over an extended period. (And, as an activity I would not normally dare undertake, it will impact on my health for even longer than it took to produce.) Not just the physical pain of assembling the words – a lot of which I ended up typing, rather than my usual dictation: because the stresses on my mind (Had I forgotten something important? Was I making sense?) and body (leaning over the table with my pen; or my tablet with a stylus; or my fingers with a keyboard – all as I moved around the house, sitting in different places, different positions: to avoid locking up, and increasing my discomfort) were such that my speech became hesitant, slurred and non-fluent; indecipherable… – but also that mental anguish: as I struggled to work out exactly what, and how much, information was required; kept discovering gaps and mistakes in my initial answers that required constant revision; and debated in what format I might manage to produce them. (Processes that I believe most other respondents – being badly disabled, by definition – must also go through.)
     I was told [that completing forms electronically] was now not allowed (with no good reason provided, to my mind – especially as this [form] is for the most seriously disabled); and I rapidly discovered handwriting more than a few words had become impossible (both for legibility, as well as the limitations of its intense physical torment…). I am disabled – increasingly so. And that disability means that completing forms is beyond my usual ever-narrowing limits. I am no ‘supercrip’, though, in going beyond them. I am simply doing this to gain the benefit that I believe is rightfully mine. (And, so far, it has taken me over forty fragmented hours of growing wretchedness and ever-decreasing productivity to provide it.)

By the way, the only excuse I was given for not being “allowed” to complete the form electronically was the purported issue of security (this, from the minister’s representative):

Due to the sensitive nature of customer details, there are very few instances where the DWP… would correspond by email. Once an email is outside of the government secure network any information cannot be classed as secure. We work to strict security guidelines to protect customer information.

However, in the original letter, the minister herself had written:

This way [email] of communicating is now widely used within the Jobcentre Plus network and is promoted at every opportunity.

Although I found this doublethink somewhat amusing (ha-ha); and had to laugh at the ironic triple bombardment of “secure” and “security” – especially coming from a Government that wishes to read, listen to, and store every single byte of our digital utterances for eternity deep within the vaults of GCHQ – I did wonder why my previous submission had been so readily accepted by email. However, I countered with this:

Surely, if an applicant is happy to provide their information in this way (which, to my mind, is no worse than sending personal information – including bank account details – through the mail in obvious brown, DWP-branded envelopes; especially as these then frequently get lost on their way to the correct section…): fully au fait with the limits of Internet security – which they could sign a statement to acknowledge – then that covers any liabilities you feel you may have.

Of course, the Government could – in addition; or instead – set up Web-based, secure, encrypted communication channels or apps for us to use – as the banks, etc. have been doing for a while. But perhaps this suggestion is simply too technologically advanced. (And maybe provides unwanted convenience for the end-user.)

Sitting here, then, at five o’clock in the morning: not being able to sleep, because none of my usual analgesics (including large doses of both codeine and morphine) have made the slightest impact on what I can only really describe as my consequent ‘agonies’, I have to ask: Why is something so apparently simple so utterly difficult? I feel as if I am living in an antiquated Kafka-esque world with a welfare system very much skewed in favour of the State; and where government is delivered through the over-complexity of administration; the under-supply of knowledge; and a complete lack of common sense – somewhat in the manner of Terry Gilliam’s stunningly prophetic film, Brazil.

I would have hoped (perhaps a smidgen idealistically, I admit) that the DWP – an organization that deals daily with thousands of disabled people (many worse off even than myself) – would be much more sympathetic, or even empathetic (a power they could begin to absorb by observing us struggling with/testing their communication systems…). Sadly, the reality – as I read in the news almost every day – is very, very different. We have a health service that can no longer afford to care for the unhealthy, or meet its targets; a benefits system which bestows little benefit, or benefaction – or even social security – if any, on those who receive its meagre payments (until they are sanctioned for the sake of targets). Money flows from the poor to the rich; and we are expected to know our place: like some over-disciplined Victorian child, neither being seen nor heard.

I personally, therefore, have become increasingly political, as I have become increasingly disabled. But does this also hold for others in my position?

Before I go on, I have a wonderful ‘warning’ note, from Erving Goffman’s 1963 book, Stigma: Notes on the Management of Spoiled Identity

The problems associated with militancy are well known. When the ultimate political objective is to remove stigma from the differentness, the individual may find that his very efforts can politicize his own life, rendering it even more different from the normal life initially denied him – even though the next generation of his fellows may greatly profit from his efforts by being more accepted. Further, in drawing attention to the situation of his own kind he is in some respects consolidating a public image of his differentness as a real thing and of his fellow-stigmatized as constituting a real group. On the other hand, if he seeks some kind of separateness, not assimilation, he may find that he is necessarily presenting his militant efforts in the language and style of his enemies…. His disdain for a society that rejects him can be understood only in terms of that society's conception of pride, dignity, and independence. In short unless there is some alien culture on which to fall back, the more he separates himself structurally from the normals, the more like them he may become culturally.

In 1960, Beatrice Wright wrote – in Physical Disability: A Psychological Approach (later revised as A Psychosocial Approach) – that…

Although it is important to understand that a person with a disability often shares problems in common with members of other minority groups, there are some marked differences. One of the most significant is that he rarely has the kind of group sanction and personal valuation that endorses behavior reflecting the disability. Rather, the typical advice is to appear as much like a nondisabled person as possible, and his adjustment is often measured in terms of his skill as an actor.

There was therefore, originally, no political cohesion amongst disabled people, because (at least from a medical perspective) “disabled people” are all different – although this also applies, of course, to “members of other minority groups”, just in many more respects: in that we all have different disabilities or impairments; different ‘levels’ of disability; and therefore unique needs. However, as part of the growth of civil rights movements (including gay rights and women’s rights) during the 1960s and 1970s, there was a realization of – as Carolyn Vash (1981) puts it – “the psychological benefits of belonging to a group with a solid, political power base”: and therefore the emergence, additionally, of ‘disability rights’. In parallel, what later became known as ‘the social model’ of disability began to develop:

The social model of disability is a reaction to the dominant medical model of disability which in itself is a functional analysis of the body as machine to be fixed in order to conform with normative values. The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences. The origins of the approach can be traced to the 1960s; the specific term emerged from the United Kingdom in the 1980s.

There are problems with both the medical and social models (as well as all their offshoots). However, my personal view – after many years of thought – is that you probably need a bit of both.

The ultimate objective of equality and human rights movements is not about dividing up finite resources among competing interest groups, but deciding priorities through debate and democratic argument. It is about genuinely involving people in the decisions that affect their lives.

(I don’t want to go into too much detail here: so, if you’re really interested in this kind of thing – i.e. disability rights, politics, and history – then may I suggest getting hold of a copy of Tom Shakespeare’s brilliant, seminal, book, Disability Rights and Wrongs. Chapter 3, Critiquing the social model, and Chapter 5, Labels and badges: The politics of disability identity, will tell you much of what you need. However, if you desire something a little more concise: then this 1985 article, by Harlan Hahn, also comes very highly recommended; and is a very good introduction.)

Politics deals with messy and complicated situations. For this reason, the study of politics is concerned not only with the political ideal, but also with the best that can be achieved here and now.
– The King’s College, New York City: What is politics?

If you accept that “Politics is the realm in which we attempt to realize some of our highest aspirations: our desire for political freedom, our longing for justice, our hope for peace and security”; then, to be honest, I think being disabled politicizes you, whether you like it or not. You are – even if you don’t have a fully paid-up membership card – part of a group of people with certain broad, shared characteristics, fighting – still, after all these years (especially, in the UK, because of the Government’s repeated use of its looped “shirker” meme) – for any or all of: acceptance; accessibility; rights; positivity; benefits. It is a different ‘sort’ of politics, though:

…the political activism of the handicapped… seems to represent a style of politics not entirely captured by the labels ‘instrumental,’ ‘expressive,‘ or ‘symbolic.’ This fourth political modality, while equally symbolic, primarily concerns not status, life style, or morality, but rather identity or being. While such social movements may have strong instrumental components, insofar as they seek to effect changes in public policy, they consciously endeavor to alter both the self-concepts and societal conceptions of their participants. Political goals and strategies often become a vehicle for the symbolic manipulation of person and the public presentation of self.

However, it is also a form of politics that has grown – like all “civil rights” movements – out of deep, humiliating, life-destroying oppression. There is a signficant difference, though; which is what, I believe, makes it so much more personal, individual – with perhaps as many definitions as there are disabled people:

There is no doubt that the history of disabled people is littered with the most grotesque and inhumane attempts to wipe them off the face of this earth – even progressive socialists, like the Fabians, of the early twentieth century supported the idea of eugenics to create a super race until Hitler’s experiments with it consigned the idea to the scrapheap. Of course, the first step towards unwinding this hatred would be to promote positive images of disabled people, of the excavation of a hidden history of great contributions, of heroic stories, of moving towards light and glory, of asserting the right to exist, of being and becoming visible. It has been the inevitable pattern, with some variations, of the feminist, anti-racist and gay movements among others. But this is where the similarity ends, or should end. Whereas the attributes of sex or race or sexual orientation become a ‘handicap’ because of patriarchy, racism or heterosexism, there is a point at which impairment becomes a ‘handicap’ not merely because of disablism but a condition which can cause pain, discomfort, aggravation and frustration to the individual concerned, regardless of how far society travels in its attitudes and how far technology succeeds in bridging that gap.

There is still, though, a rift between organized disability politics and the inadvertent politics of the disabled individual:

The challenges we face at the beginning of the 21st Century demand that our slogan ‘nothing about us without us’ speaks to and of our diversity. We should constantly be asking and adjusting to who ‘us’ is. It must now speak less of our separateness and difference and more of our interdependence and connection with others. Critically it must be about seeking to share control and responsibility, not simply taking control.
     Redressing injustice still requires a politics of recognition, but this should no longer be reduced to a question of group identity or allegiance: rather, it requires a politics aimed at overcoming the barriers which prevent all individuals, families and communities participating as full members of society; it requires a politics aimed at overcoming the misrecognition they individually face….
     Disabled people who are or have been associated with disability politics and have been active in the movement… must accept that what is ultimately important to the individual is their own and their loved ones’ life chances, not those of the group one is considered to belong to. It is little comfort to an unemployed Bangladeshi woman with mental health problems – among the most disadvantaged of all people in Britain – to know that disabled people’s employment rate has improved by 8 percentage points over the last decade. This is especially so when it is clear that neither the disability movement nor the social policy programmes aimed at improving disabled people’s employment opportunity, have gone anywhere near recognising and responding to the complex barriers she is likely to face. Why should she feel part of a movement in which she is invisible?

To be honest, after all that, I don’t actually know if disabled people, however “inadvertently politicized”, are more politically active – either individually, at the ‘grass roots’, or as part of an organization – than others who have things to fight for, or about (in our case, particularly the social – and economic – aspects of our lives). Available figures would indicate not. This lack of involvement is, sadly, also reflected in Parliament (perhaps because of any of the social, economic and medical barriers to mobilization; and will not be helped by the withdrawal of the Access to Elected Office for Disabled People Fund happening, with perfect timing, next month: just as the General Election hits its stride…). In fact, according to Disability Politics UK, which “is campaigning to get the law changed to enable Members of Parliament to job share – a crucial step in addressing the under-representation of disabled people in public and political life”…

There are over 10 million disabled people in the UK. Yet there are only a handful of MPs who have declared that they are disabled….
     The House of Commons is not representative of the electorate. The House of Commons has 650 MPs. Of these 650 [as of 2012], there are 504 male MPs, so women are seriously under represented. There are 27 MPs of black and minority ethnic [BAME] origin, but there would need to be 55-60 [BAME] MPs to be representative of the [BAME] population. There… would need to be 65 disabled MPs to be representative of the number of disabled people in the population.

… which is why I probably keep hitting my head against its Anston limestone walls. One day, just one day, given the density of my skull, I may just break through….

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