Saturday, 12 July 2014

Scuba diving in a wheelchair? Come on, I know you want to....

Last time in my blog I talked about the 2 models of disability - the social model and the medical model. You can read that post here, but to recap quickly basically the medical model says that disability is caused by the limitations and symptoms of their physical conditions, for example, if someone is in a wheelchair and is unable to go up a flight of stairs it is seen as a consequence of their disability. The response to this is to try and normalise the person as much as possible, through operations, medication, hearing aids or cochlear implants etc.

The social model on the other hand believes that disability, is at least in part, caused by the world not adapting to suit their needs; it is the steps that are seen as the problem, and the answer is to make a world in which not being able to use your legs isn't disabling or limiting. 
The answer to deafness would no longer be to make everyone have cochlear implants, but to raise awareness of what deaf people need, and to have more users of sign language so their deafness is no longer a problem for them.

But it is not only that physical world that needs to change to stop creating disability, it is also he world inside people's heads. It's about changing the perception of disability, changing attitudes and emotional responses. 

This is all very abstract, let's bring it down to individuals, one individual: Sue Austin. 

Following an illness which profoundly affected her mobility, Sue finally got an electric wheelchair. For her the experience was amazing:

"it was a tremendous new freedom. I'd seen my life slip away and become restricted. It was like having an enormous new toy. I could whiz around and feel the wind in my face again. Just being out on the street was exhilarating ... But even though I had this newfound joy and freedom, people's reaction completely changed towards me. It was as if they couldn't see me anymore, as if an invisibility cloak had descended. They seemed to see me in terms of their assumptions of what it must be like to be in a wheelchair. When I asked people their associations with the wheelchair, they used words like "limitation," "fear," "pity" and "restriction."

Until in the end:

"I realized I'd internalized these responses and it had changed who I was on a core level. A part of me had become alienated from myself. I was seeing myself not from my perspective, but vividly and continuously from the perspective of other people's responses to me"

And so she set about challenging these perceptions, by creating beautiful works of art with her electric wheelchair. And then she did something extraordinary: following her decreased mobility she began scuba-diving, and found in it a freedom of movement that only her electric wheelchair had been able to offer. But people's reactions to that were so different, scuba diving is seen as an adventurous, exciting, the wheelchair as limiting, fearful. So she made a scuba diving wheelchair! When she showed the film of it to people, their attitudes changed to joy, and even envy cause it looked just so damned cool. She had reframed their concept of wheelchairs by putting them into an entirely different context.

"because in that moment of them seeing an object they have no frame of reference for, or so transcends the frames of reference they have with the wheelchair, they have to think in a completely new way. And I think that moment of completely new thought perhaps creates a freedom that spreads to the rest of other people's lives. For me, this means that they're seeing the value of difference, the joy it brings when instead of focusing on loss or limitation, we see and discover the power and joy of seeing the world from exciting new perspectives. For me, the wheelchair becomes a vehicle for transformation"

I've had a similar experience to Sue: when I eventually bought a wheelchair, the freedom it brought me was amazing. But peoples negative reactions to  in the end made me feel negatively about it myself, and about my disability in general.

We need to create a new narrative of disability. We need artists (like Sue Austin) writers, and filmmakers to create this alternative narrative and smash preconceptions. But how do we do that? Where does the old narrative come from? What should the new narrative be? HI think one of the best ways of answering for these questions comes from looking at other minority groups whose narrative has changed dramatically which I'll be looking at in my next post.

Tuesday, 24 June 2014

Medical vs Social Model of Disability

My apologies if this is a bit higgledy-piggledy, the thing is that I am only fully thinking about bits of what I’ve said as I’ve been writing. I always thought I was the expert in talking about disability, that I knew everything I need to know about it, and to know what I thought about it. But as I write I’m gaining new insight.
So let me put this talk of films in context of some of the theory of disability that I’m starting to learn. This states that disability can be split in two:
There is the medical model of disabilty, which says that a person’s disability is caused by unfixable limitations such as pain, illness, and such as not being able to move your hands or legs. In the medical model the strategy is trying to “normalise” someone so that they can fit into mainstream society.
Then there is the social model, which says that disability exists because of how our societies are structured. This can mean practical things such as access, making adjustments so that disabled people can be part of society, and allowing people the financial and practical support that means you can circumvent much of the limitations of their disability, e.g. ramps for wheelchair users, sufficient care to meet needs and have a good quality of life, or making sure that Braille forms of books exist.
It was useful to me learning these models, because it made me able to put this into categories in my head what parts of my disability are unfixable, and which are to do with the way that society responds to people who might need extra help. And in talking about housing and care in my previous posts, I have been, I realise, talking about the social model of disability, of making sure that individuals have an equal quality of life and freedom.
And I realise that the whole question is to do with normalisation over acceptance. It is seen as easier to change someone so they can fit in with society around them, then it is to allow people differing needs and differing levels of help. Or to put it another way it is society moving from being homogenous to heterogeneous. It’s back to the diversity thing. And in a way it’s back to the sexuality thing, where instead of being encouraged, people’s sexualities were repressed, and gay and lesbian people were made to normalise by society. Looking back it seems ridiculous, barbaric and nigh on impossible to require this sort of conformity, and I wonder if in 50 years time if society will look back on how people with disabilities with the same horror and disbelief.
Perhaps the best place to look at the social versus medical theory of disability is in the deaf community. The medical establishment tends to see deafness as something that should be fixed, with hearing aids, and cochlear implants, with teaching lipreading and cued speech so that deaf people can learn to talk and hear. They want to normalise their patients so they can fit in with the hearing world. And it’s true that being deaf does place limitations for access to certain things, but many Deaf people feel that they don’t have a disability, they just have a minority language, British sign language, and what they want is the more people to speak it. When Deaf people are together they don’t have a disability, when in the hearing world the disability is created by the lack of people who speak their language.
I spent a lot of time in the Deaf community, when I was at university the years after that, I studied sign language and worked with Deaf people, and I moved in myself from a place of seeing deafness is a bad thing, and not understanding why people would not correct their deafness if they could, to seeing the beauty of their language, and of their culture, just as I would of any other minority.
Learning all this has not made me want to stop having all my illnesses, but it’s made me think that if I must have them, how much of the disability is actually created rather than inherently there. And I think for me it’s about 60:40. That means that there’s about 40% of my life that could be changed to improve it. To say to society: you are creating my disability, moves the responsibility away from me, puts the onus back on the outside world. And for those who say “but that’s too expensive” I repeat what I said in my earlier post: not my fucking problem – go sort it out yourselves. Make your world one I can live in.
I said this to the straight world and it made space for me (eventually), and now I ask the non-disabled world to do the same.

Wednesday, 11 June 2014

Being in minorities

Last month I went to Gay Pride. There is something wonderful about it, something joyous. I never used to understand why people felt the need to go to Pride - I was never proud of my sexuality, it was something that was just a part of me like having 10 toes or blonde hair. I understood why it was important for those who have experienced negative reactions from other people needed to be proud, and that that pride was hard-won, and acceptance and that self-respect hard-won. But I've never had any real negative experience because of my sexuality, not from anyone who really mattered to me, and generally not from the outside world. I understand that I'm very lucky in this, and that people whose family or friends all peers have turned against them because of their sexuality, and also that not looking like a “conventional" lesbian protected me from negativity from the wider society.

But then a couple of years ago I went for the 1st time and I got the experience of being with 1000 other people who reflected some part of yourself which you did not find in mainstream society. Everywhere there were mirrors of myself, everywhere experiences that reflected my own. And not just in sexuality, but in gender too, there were girls dressed as boys, boys dressed as girls, masculine women, feminine men and everything in between. It was a celebration of diversity, of not straightness, not polarised gender, not homogeny. I didn't realise how much I needed that reflection in my life or anticipated how much it affected me that suddenly I went from being in a minority, to being in a majority.

And as a woman I am constantly bombarded with media telling me how I should look or dress, and being surrounded by women whose conception of femininity and attractiveness is so different from my own, and the conception of masculinity which is so far from what is I feel it should be. I live in a binary world of masculine and feminine, not a spectrum. Sexuality is a spectrum. Gender is a spectrum. Diversity is innate within the human species, and yet that is often not reflected in the mainstream world and in media. One of my favourite poems is by Louis MacNeice and it's called Snow, and my favourite verse this one:

World is crazier and more of it than we think,
Incorrigibly plural. I peel and portion
A tangerine and spit the pips and feel
The drunkenness of things being various

It is for similar reasons that I enjoy the Respect Festival in Exeter that I also went to a recently, there is a variety in how people look, how people dress, how people express masculinity or femininity. There is plurality in short. There are people who can talk for much longer and more eloquently about what it means to be a woman, what it means to see gender or sexuality as non-binary, but in all these things I am a minority, and I am not reflected in the mainstream world - whether in films or on TV, in newspapers and magazines, in advertising, in culture - as well as in the real world -  in public, in pubs in shops.

When a young child is growing up, one of the 1st ways they learn who they are, learn that they are separate from the world is when they see themselves in the mirror, in the same way as we grow older our self concept is created from the reflection we find of it in society, the reflection we find in others. But it is, as one feminist said in the documentary Miss Representation (about how girls self-concept is being formed by the media), “you can't be what you see". No reflection = no ability to create accurate concept.

There is a long way to go to creating positive reflections of gender and sexuality for both men and women, but things like Pride play a big role, even if it's just a one-day, of what it's like to find who you are in the world, to see that positively and joyously reflected.  But the minority that is I find it hardest to be in, and in which I feel the most invisible, is in being disabled, and this post has been in some ways a pre-ample to talking about that. For in great irony Louis MacNeice, who wanted the world “incorrigibly plural" described the ideal male poet as “able-bodied", showing a level of Disablism that is still prevalent in our society.

Sunday, 14 July 2013

Exeter City Council adopts Living Wage Policy

In amongst the wage freezes and wage cuts across the public sector Exeter City Council has done a quietly revolutionary thing: to make sure that no employees earn less than a living wage.

A living wage is not the same as the minimum wage, (which is set by the government), it is the amount seen as the minimum a person can live by  cover the basic living costs.

The council have afforded it very simply: by reducing the wages of those at the top of the organisation, and using it to supplement the wages of those at the bottom, and to weigh the increased costs of the wages against the reduced need for income related benefits such as housing or council tax benefit.

There have been many people criticising the welfare bill recently. One of the biggest group of objectors to those claiming benefits, are not just the people at the top, but those who work full time but still live relatively close to poverty at the bottom.

Despite rising living costs, the minimum wage has stagnated and is still only £6.31, meaning that people with jobs can still be at or below the poverty line.

There is a sense that someone shouldn't be able to earn the same or more in benefits, than someone who is in the same situation but working full-time.

This was seen very clearly in the recent BBC documentary on benefits, and I think that their sense of injustice is valid. 

Because I'm disabled I have carers, and I'm shocked and somewhat appalled by how little they earn. Many of them are single parents or have children but are forced to work because their partners income is too low to support them both.

But the focus has become skewed. It shouldn't be trying to push those on benefits into greater poverty, as a way to achieve greater income equality, it should be raising the minimum wage to at least the living wage (£7.45) . 

A poor working person arguing with a poor person on benefits about who is most poor, is like 2 people arguing over who has the biggest grain of rice, whilst down the hall rich people are at an eat as much as you like.

There is no reason that it would be any more difficult to implement these changes in big business, in fact it should be easier. 

All you would have to do is take money from people at the top, and redistribute it towards the people at the bottom.

It might be harder to implement in smaller businesses, but the government could make it easier by, for example, giving tax breaks to medium-sized and small businesses who pay their employees the living wage.

Putting aside everything to do with equality, fairness, and a decent standard of living, doing this makes so much economic sense.

It means that there will be a reduction in the need for some income-based benefits, it will mean that people have more cash in their pocket. The economy will never recover if people are living in poverty, because there will be no money going into the system.

And if, as the government say, (though I'm doubtful about the truth of this) that people stay on benefits because they are financially better off, it will incentivise people to get jobs because they will be able to earn more, not less, than those on benefits.

Income inequality is incredibly important, not just for individuals, but for society as a whole. Countries with greater income equality have lower crime rates, better literacy, better health and longer lives than unequal ones. 

I would like to see this living wage extended across the public sector, and into the private sector, but unless the public sector lead the way and unless there is new legislation to encourage the adoption of the living wage, it will not change. 

So in a rare moment of praise for Exeter city council, I salute them the putting this into practice, and hope that other city and county councils will also adopt it.


Saturday, 29 June 2013

A response to a piece in the daily mail

An open letter to Mark Littlewood following this piece in the daily mail:

Dear Mr Littlewood

I read with interest your piece in the Daily Mail online about publishing all of the names of people on benefits, and I wanted to respond to it personally as one of those people on benefits.

I can understand your interest in finding out where the money you pay goes and who it is paid to, and so I will introduce myself:

My name is Katie, I am 31 years old and I have been claiming benefits for several years. I claim the higher rate of mobility allowance and the middle rate of care allowance for DLA because I find walking too painful and difficult and I need help with basic tasks like getting up and dressed, food preparation and a whole host of other practical things. Because of my disability I am unable to work and so also claim employment and support allowance, including extra money given to me to meet to meet the extra costs involved in my life due to the disability.

My money goes on lots of things, for example I cannot use my hands to write or type without pain and so I use speech recognition software, which I have to pay for myself, and including the headset comes in at around £200. A large part also goes on transport-fuel costs, wheelchair hire, taxis because I am unable to drive because of my disability.

So, I want to say First: thank you.

I am actually profoundly thankful to the people who pay their taxes to enable me to live my life. It is a frequent source of wonder to me that people I don't know are giving me money to a complete stranger, and not an infrequent source of guilt that I am reliant on other people, even though I know logically it is not my fault that I am ill or need to claim benefits. When I was a child and a young adult I never thought that this is where I would end up, but life is unpredictable, and I am grateful that when I became unable to support myself this state supported me.

Tax, and the benefits system, is to me a great gift, an evidence that we live in a civilised society. It is the embodiment of the concept that 'there for the grace of God go I". It is the acknowledgement that life is uncertain, and we would like others to be treated in the way that we would want to be treated in that situation, and that that situation can come about out of the blue.

People end up on benefits for all sorts of reasons - that they are disabled or are looking after a disabled relative, because they live in an  area where there is a lack of jobs, because they are single-parent with young children, because they are elderly, because they are between jobs, because they have graduated university only to find they graduate job market has shrunk.

These are just the people who entirely rely on benefits,  a large amount is also  spent on “top up benefits" the people who are working but are still unable to have enough money to live on.  [1]

I hope that other people will come forward with their names and their stories, to show you why we have come to be claiming benefits. But the thing is, most people won't, most people will be to frighten or ashamed to be honest about it.

You say that if people are ashamed they shouldn't claim benefits, but that shame doesn't come from inside them, it comes from internalising the judgements that people make about those on welfare like your assertion "that we now give payouts to people who don’t really need them – and for long periods of time".

It is also worrying to see your naïveté about people's behaviour towards benefit claimants. You say that “surely, no one needs to worry about violent retribution against claimants". But there has been a worrying increase in physical and verbal abuse towards people on benefits, especially disabled people, because people have internalized the government's judgement that we are “scroungers". I myself was verbally abused a few months ago by a stranger who told me that I was pretending to be disabled and that I was “one of those scroungers". [2]

What disturbs me in your article is not that you want to know where your money goes, or if it's being spent well, but that the assumption that at least half of its is being misspent on people who do not need or deserve. You say“ publishing the data will clearly show that we now give payouts to people who don’t really need them – and for long periods of time” Do you have any evidential basis to back up this claim?

You assume that, like the Victorians did of their poor, that a person's poverty and need to claim financial help is their own fault, that there is something that they could be doing to change their situation but they're not.

I don't normally bother arguing with people who think like you, but you have money, and you have the power to say what you think and it has become something that can influence other people.

You are a director of an economics institute and things you raise are questions of economics not of personal fault. The people you blame are just the ones most affected by the economic situation. They are the canaries in the mine, signalling there is something wrong.

Instead why not look at the genuine reasons for why there are higher levels of poverty that lead to benefit claims:

Why unemployment rates are so high in certain areas of the country, where industrialized manufacturing and mining has ended but new jobs have not been created.

The number of jobs available versus the number of people out of work: However strong an individual’s motivation to work the truth is that there are about 500,000 job vacancies, yet at least 2,500,000 people looking for work.

Why house prices have increased so much that many people cannot afford to pay the mortgage or the rent as well as their other living costs, and how the lack of social housing means that the government is having to fork out so much money in housing benefit to private landlords.

That thanks to new advances in medicine, people are living longer than they used to,  increasing the length of time people draw pensions. People who previously would have died through accident or disability are now also able to live, but are unable to support themselves, and so claim benefits.

At the real wage cuts and freezes for those who do have jobs, meaning that people who work are still below the poverty line and need to claim. Between 2008 and 2013 the minimum income standards for a family have four have risen 25%

Look at the number of job cuts and also the increasing instability of many jobs, where people are offered casual or short term contracts, leading to people having to claim job seekers allowance between jobs.


Sunday, 13 January 2013

Two films: Two Cultural stories

How the rise in popularity of Scandanavian TV reflects our changing views of women's status in film and TV. 

In the past 3 or 4 years our television screens have become filled with all things Scandinavian, much of it has been what is called “Scandinavian Noir" -crime and detective series such as Wallandar, the killing as well as “Borgan" which is as close to the equivalent of “West Wing" that the Danish are going to get!

One of the most popular films has been the adaptations of Stieg Larsson's series “The Girl with the Dragon Tattoo", and although I haven't read the book I recently watched both the American and Swedish versions of the film. There are lots of things that are contrasting, the Swedish version was much more grittier and realistic, more understated and subtle, but the thing that struck me most were a bit different portrayals of the main character Lisbeth in the films.

This is going to reveal important things about the plotline, so please do not read unless you have watched the film or  are not planning to! In the American version of the film the plot is very much more led by the character played by Daniel Craig: he's the one to track down Lisbeth to ask her to work for him, and the investigation is largely led by him, where as in the Swedish version it is Lisbeth who makes the 1st of the discoveries about the case he is working on, before he does. I also do not think that the decision to cast Daniel Craig, who also plays James Bond, is accidental. In the American film Lisbeth ends up being much more of a sidekick, to the charismatic and reckless Mickael. Where as in the Swedish version he is much more of a passive character, following Lisbeth's lead. 

But the most startling thing is the differences in their relationship with each other in the 2 films. Although Lisbeth instigates their relationship in both of the films, in the American one she ends up rejected and sidelined by him, and ends with him going back to his lover, and the sad final scene of her putting the present she's bought him in the trash. Where is in the Swedish film it is her who leaves mysteriously, and he who is pining after her when she doesn't keep in contact with him. 

So what's the big deal about that? Well I think it really reflects the different attitudes to women in America and Scandinavia. One of the positive things in Scandinavian TV and film is that they are willing to have female strong lead characters who drive the story, where men can take a much more passive and less controlling role .And this is reflected in Scandinavian culture and politics. It is no accident that these countries have a much higher level of equality between men and women both in income and status. In Iceland 5 out of the 11 Cabinet members are women, and the Prime Minister herself is not only a woman, but also openly gay. Can you imagine that happening in "West Wing"?

But this move away from less stereotypical roles for men and women, reflects not only greater gender equality, but the greater level of equality found in general in Scandinavian countries. Norway, Finland and Sweden all have greater equality in all other areas, in terms of income and quality of life, as well as life expectancy, educational attainment and many other things, with the US lagging behind near the bottom despite it being a so-called “developed" country.

I think that this burgeoning  interest in all things Scandinavian is a positive thing, showing that people are ready to move away from the macho, male dominated, testosterone fuelled film and television making that is so prevalent in America, towards a more equal role for women both in society and in our  choice of television and film.

Monday, 7 January 2013

Disability Witchhunt

In the past year, verbal abuse towards disabled people has increased by 41%. The governments demonisation of disabled people claiming benefits, presenting them as fraudulent, lazy and responsible for robbing a recession sunken country of its precious funds.

In a recent survey that public misconceptions about welfare have been wildly out of step with the actual figures. When asked about the proportion of the welfare budget that is fraudulently claimed, on average people placed it as 27% instead of the 0.7% that is actually estimated.

This is a context for what happened to me tonight. I was at the station waiting for a train, when a man came up to me and said:
And he said “why have you got a stick?"

I  was startled and said “pardon?" 

 “what's wrong with you?". 
“It's complicated to explain" i replied

My train had come, and I was waiting to get on it, but because he was standing between me and the train, I couldn't get on it straightaway. At that point he moved towards me, I moved back and he said aggresively:

You're not really disabled are you? Are you, are you? You're not disabled. You're one of them aren't you, you're one of them that's pretending, you're draining this whole fucking country" 

He got on the train, I didn't because I don't want to get in the carriage with him, and I sat back down at the station and burst into tears. 

My disabilities have ruined my life, they make it so hard for me to do almost everything. Every day it's a struggle, and it is terrible to be told that you are not as ill and in pain as you know you are by someone else. And it's terrible to have the government who will not believe disabled people when they tell them what they need, and what they can't do.

Picking on minority groups to divert attention from the actual problems is not something new. Jewish people, gypsies, women, gay and bisexual people have, and often still are, blamed for the ills in society. Freud says that persecution is a way of externalising your anger and hatred, by making the Other a scapegoat for the ills of society.

And I am scared: scared for myself and for other disabled people, who face loosing their income, their transport, wheelchairs, and independence and i suspect probably their lives in some cases. 

With the benefits cut back by coming in during the next year, there is going to be a witchhunt on disabled people claiming benefits. Maybe they should go back to the old way of trying people: by throwing them in water and seeing if they float. Because the way that people's disabilities and benefits are being assessed is just as ridiculous and unfair, has just as little grasp on reality, and just as little understanding and compassion and plain common sense.