Tuesday, 25 June 2013

Who's dissing my ability? Being broken, leadership and the attack on equality.

So today I was in pain, and after doing some yoga and taking some pain killers I decided to head out in Beijing with one of my walking sticks. 

One of the things I wanted to look at while I was here was attitudes to disability, so this was not only practical but also an opportunity to do some observing. 

The reason I'm interested in this is to do with the sense of the individual. In the UK, our Equality Act (2010) and previously the Disability Discrimination Act (1995) requires an employer or public service to adapt their premises and modes of working to the disabled individual - as far as is 'reasonable' (which is always wherein lies the rub). This structure is supposed to take the individual at the centre of the decision making, and place the changes in the world around them. (Whether it in fact works in practice is always up for discussion). 

China's cultural focus is on the communal, the responsibility lies with the individual to adapt themselves, to fit in, to change to suit the situation, to become one of the group. The focus on the group is so much stronger here in China, with colleagues sharing accommodation and even sleeping in the same room, your group that you work with are often your social and familial group. In the UK we tend to lead very separate and individual lives, dipping in and out of different ponds all day, from colleagues to various separate friends, groups and acquaintances. 

So with this in mind, how does China deal with the individual who cannot fit in, who is 'dis-abled' who's ability to take part is blocked by the way in which things are structured or built? This is by no means an exhaustive exploration of the subject, and I need to do some serious asking of questions, just as soon as I find someone who speaks English. This is the experience of a day with pain and a walking stick. 

The first thing that happens is that I get a lot of stares. Every single person I walk past on the way to the subway stares. This is compared to not staring normally, sans stick, so I don't think it's a white girl thing, and I check to make sure I haven't tucked my skirt in my knickers or got my coffee all down my top. Nope. It's the stick. 

Next up it's the subway, which is pretty much unnavigable without a lot of steps, a lot of steps. Entertainingly Dong Si station has a very elaborate ramp system to get into the station, and then you are immediately met with a massive flight of steps! 

Dong Si's helpful ramp

Dong Si's less helpful stairs.

These photos were taken back to back, spinning on a sixpence. Ho hum. Down I go . Ouch Ouch Ouch slowly Ouch. 

I guess that people with mobility issues take cabs a lot … 

On one of the trains one young chap offers me his seat, but on the other 3 everyone stares fixedly at their mobiles while I stand. I can't pre-empt the thought process here, perhaps it's "well if she chooses to get the subway she's probably fine standing" or maybe it's "I can't be bothered, I'm sure someone else will offer" or perhaps even "if she needs a seat she'll ask someone". To be honest I don't even know what the etiquette is on the London Tube, most people avoid eye contact and stay seated. Should I ask? Or just wobble and glare at them? It's a minefield. For example, a woman sitting in the 'disabled and elderly' seat on a London tube … she doesn't look disabled, but then, without my stick, neither do I … do I challenge her or just hope she feels the guilt? Or maybe she's pregnant, in pain, or partially sighted … how do I know? Minefield. 

Which brings me to a slight tangent, about how we categorise disability. During the para-olympics I witnessed some incredibly fit and strong, brave, tenacious individuals compete and win medals. The irony is that all the wheelchair users, these strong, fit, humans with incredibly rewarding lives are entitled to Disability Living Allowance, on the basis that they cannot walk 100m. I am not entitled to this benefit, because, most days, I can walk 100m.

However, I also spend days, weeks and sometimes months in bed, ill, with pain, nausea, and my earning and social potential ripped away from me, my life is reduced to abut 25% of what a 'normal' person would do, achieve, learn, and enjoy. Surely this view of dis-abled which focusses on 'can you walk' is outdated by now? It smacks to me of being designed by some well meaning but clueless 'walkie-talkie' (Ian Dury's term for the non disabled) ... "are they in a chair? Right then you're in".

Back to today .... I wasn't out long, the pain increased to a point where home and tea seemed like the best option. I'm very glad to be back here listening to some lovely music and full up of wonderful painkillers, basking in the aircon (I know it's evil - sorry) writing to you chaps instead of wobbling about in pain. 

But while I was out, I started to think about the term 'disabled' and what it actually means. Starting off with the term invalid, it's pretty rough to describe someone as in-valid and I can't believe it's only a few years since we decided that might not be on. So then on to the term 'disability' to say 'he/she has a disability' confers the inability onto the bearer, she has something different, strange, it's her problem. Disabled however is a sightly tricksier beast, it infers that something has dis-abled me, like being dis-armed, dis-proved, dis- organised, it takes someone or something to do the dissing. It's a more active more powerful term.

So what or who is dissing my ability? We could argue that it's the illness, my ME disables me, it takes away my ability to do, to take part. We could also take the view that it is the way things are which dis-able me. It's not that I can't do things per-se it's just that I can't do them on 'normal' terms. This is where the term 'differently abled' comes in. It's fairly new and been quite slow to catch on …

I had a long and tedious conversation with an organisation I once worked with about this, and without going into too much detail, they said I could not do my job, and I argued that I could do my job, but not according to the infrastructure of commuting, parking the car, walking to the office, lifting stuff, etc. It wasn't that I was unable, but there were structural (and easily changeable) things which made me unable. 

Since I've been working for myself,. I build my working day around my health. I have fairly easy to follow rules which enable me to be flexible and I work when I can (not always 9-5). Those I do work with are given clear information about my illness and things I need in terms of work style (i.e. I don't do last minute, because I don't have magic energy that I can pull out of nowhere to stay up late to finish something before a deadline. If you need something from me, give me a couple of weeks so that I can do it when my illness lets me). It all works remarkably well and remarkably easily - which to me at least proves, that it's not me that is unable, it's the structure which insists I must live my life in a certain way, it dis-ables me, it undermines my validity and seeks to make me in-valid because I cannot and do not play by those particular rules. 

And this is the crux of all equality for me. It's about systems. Systems which are usually designed by leaders, leaders who, up until recently, usually were white, male, wealthy, literate, straight (or pretending to be) and not disabled. So, we had structures designed to fit those people… because that's all they knew. (Think about pickled onion jars … the lids are so wide that I can't get my hand across to grip them, my guess is, designed by men, think of the leany-standy-uppy seats on the tube. I'm a fairly reasonable 5' 7" and they're too high for my arse, my guess is, designed by men. I could go on). 

Which is why, universal free higher education has begun to create a much more equal society, because in the 40 years since working class, non white, female, disabled and LGBT people started to get degrees (and be out, in the case of LGBT), they have become leaders, and they know what it's like to live in a world which doesn't fit, and they start to incorporate other people's difference into structures they design. Since we have had women in positions of leadership we have seen access to child care increase, maternity become more flexible etc. 

Which is why tuition fees are a disaster for equality. 

In 40 years, 50 years, 60 years from now, the people in positions of power will again be rich, mostly white, mostly non disabled - yes there will be women and probably LGBT people too (both of whom will face barriers and struggles to get these positions). But the economic grouping of decision makers will be less diverse than we have now. The introduction of tuition fees is not just about debt, about focussing students on subjects which deliver an income at the end of study, not just about reducing education to a marketplace, where you get to buy yourself a future. Tuition fees are a huge challenge to developing true equality leadership, and the design and implementation of appropriate systems.