I read this interesting article on Buzzfeed  “The 1970s Feminist Who Warned Against Leaning In” promoting a reissue of Sheila Rowbotham’s book ‘Woman’s Consciousness, Man’s World’.

Whilst I found it interesting with some excellent points made I couldn’t help but feel the lack of any discussion about disability was a glaring omission. The issue of work, what is work and who is valued for working are important feminist issues, they are also important disability issues. Just as feminism has  highlighted the repression of women as their unpaid labour is undervalued and exploited under capitalism we need to highlight how disabled people are written off as ‘scroungers’ as we are often unable to work and become ‘economically productive’ (and therefore ‘productive members of society’) in an abled society that makes no or little adaptations to our needs. Feminism has highlighted the importance of women doing the vast majority of care work, such as looking after children and elderly and disabled relatives. But what about those of us who are the ‘looked after’? After all so many of us are women too.

For feminism to be truly intersectional we must consider disability issues, disability is a feminist issue. Many women are disabled. Many chronic illnesses and invisible disabilities affect greater numbers of women and are not taken seriously because of this. Women with disabilities are twice as likely to suffer domestic abuse and violence, disabled people are routinely ‘desexualised’ and this has effects on issues such as pregnancy and parenthood. This is just the tip of the iceberg. I could go on, the way disabled people are expected to be passive, grateful and mostly silent in a role that echoes the restrictive ‘feminine’ role pushed onto women for example.

But back to work, in a climate where benefit ‘reforms’  and spending cuts are disproportionally harming both women and disabled people, disabled women are at high risk. When our very humanity and right to access basic support is debated every day, when we are cast as scroungers for accessing the support we are entitled to, when we are assumed to be faking it and have to jump through an ever increasing number of hoops to prove we aren’t the issue of work and disability is really important. When all this causes a massive rise in disability hate crime, It’s a matter of life and death, yet I can’t honestly remember the last time I saw a general or feminist discussion on capitalism and work which included disability as anything more than a footnote, if that.

I have written previously on how ‘leaning in’ in impossible for many women, including disabled women, and I still remain pretty much constantly disappointed by the lack of inclusion of disabled voices within feminism, even supposedly ‘intersectional’ feminism. Feminism is about giving women a voice, yet why are we leaving disabled women voiceless? We are rightly critical of the idea that women be ‘looked after’ by their husbands and not afforded any independence but where are the loud, critical voices when disabled women are becoming ever more reliant on being ‘looked after’ when our support allowing us independence is being cut? Where are the voices of those who cannot work in this society when we are discussing work, labour and class analysis? If the ability to get out the house and work has been so important to feminism and women’s ‘freedom’ then what about those of us who can’t ? I am a young woman who is intelligent, well educated and capable yet I am far from independent, I rely so much on my family because with chronic illness I am unable to work enough to support myself.

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‘Passing’ as not disabled & all the conflicting emotions it brings

Society has such a narrow view if disability I’ve found it hard to identify as disabled, despite the fact I live with two chronic conditions that affect my ability to live my life ‘normally’ which fits the definition of disability used in UK law. I feel trapped sometimes.

I have been insulted for calling myself disabled as I am ‘not disabled enough’ and this is apparently an insult to those more disabled than me.

I try to fake it as ‘normal’ and suffer burn out , emotional & physical.

I don’t ‘look disabled’ according to the dominant very narrow view if disability. In the past I have used mobility aids such as sticks & a wheelchair but I don’t need to at the moment. I am a lot healthier than I used to be and aware of the privilege this affords me, but I’m still far from what I’d term ‘abled’ or ‘not – disabled’.

I can’t cope with a 9-5 day, my sleep pattern is fucked & I nap for about 2-3 hours everyday, some days where I have something special to do I can manage a ‘normal’ day but I can’t keep it up on a regular basis & I usually pay for it afterwards, having a few days or even weeks where I am much more fatigued and achey than usual.
In many ways passing as abled is a privilege, I escape the abuse aimed at the visibly disabled. Yet it has it’s problems, if I need extra help with things I often face a lengthy explanation of my health (which isn’t fun as it can bring up a lot if emotions I find hard to deal with especially as I have depression too & emotional resilience is not my forte). So often these explanations end up with a realisation I don’t fit into any if the neat categories of ‘disabled’ we (by ‘we’ I mean  our predominantly abled society in general) are used to dealing with and  thus no one is quite sure what to do with me. The irony of this is, I don’t suffer from any rare conditions; I have m.e/cfs and depression,  illnesses that affect millions in the UK. Yet my history of support, from my interrupted and inadequate education to troubles with employment has been one of ‘falling through the cracks’, with viewed suggestions my situation is  rather unusual and that people can’t possible be expected to deal with it and oh why can’t they just build a ramp and be done with it?  Very few professionals meant to support me have had any clue what to do or have been able to do anything within the systems imposed upon them. So as my health has improved I’ve often found it easier to just struggle on as a ‘normal’ person than to navigate a flawed support system that seems confused by me and that requires extra work from me requiring time and energy I just don’t have. In university it was often easier to struggle with no support than to tire myself out chasing up support with all the extra forms, meetings, phone calls and emails this entailed.

Under Attack

In the last few years I have felt increasingly under attack as someone with invisible disabilities. The war on ‘benefit scroungers’ and the cuts to the welfare state are targeted at people like me. People who claim benefits but are seen down the pub, or walking down the road. We can’t possibly be deserving, after all we ‘look fine’ don’t we?  This is especially troubling when mental health is brought into it and people start spurting out all that ‘just pull yourself together’ crap.

This relentless attack on disabled people has a horrible affect on my mental health. I’m afraid for my future, I’m scared to admit to people I’m on benefits, that I’m ill. I worry that if I fall out with someone they could report me for fraud (99%of claims to benefit fraud hotlines are malicious). I see friends and family going off into the world and having careers, I fear I’ll never have a career, certainly not one I can support myself on. I know that I an intelligent , that I have worth as a person, that I have skills but I know that capitalist society doesn’t value them, I can’t work enough to make money so why should I be educated? I feel wasted and washed up, stuck on a scrap heap and I’m barely 30. All that hurts, really fucking hurts. Reading things like the hashtag for benefits street or any other dehumanising propaganda shit they disguise as ‘media’. Politicians saying you’re ‘not worth the minimum wage’ , the endless attacks from the DWP about ‘fraud’, the judgement from strangers who feel entitled to judge whether you’re ‘really disabled’ based on nothing but ignorant assumptions. The pervasive mindset that because I don’t ‘work hard’  I don’t deserve to be supported. I feel like I don’t matter, because I can’t fit into the structures of a world designed around those without disabilities and  I don’t get much of a chance to prove myself, my talents, my humanity. Mainstream political discourse of all directions sees me as either a nuisance or just doesn’t see me at all. Even those causes and movements that pertain to be ‘progessive’ often castigate me as an ‘armchair activist’, ‘not being a real activist’ or ‘just moaning online not doing anything’ because I can’t fit into their structures. Structures I have spent my life trying to force myself into, breaking myself to fit into other peoples boxes whilst they look on & don’t even consider making the boxes fit me.
I feel like it’s giving up too easily to give up on society but in truth it gave up on me.

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I have so much swilling round my head now on this all.

Because of a system that sees people primarily as money making objects millions of people are dehumanised, cast as burdens, forced to live in poverty, to undertake humiliating assessments designed to fail as many people as possible to access even basic sustenance. Millions are forced to seek work in a system that does not want to employ them and will not make adjustments for basic needs and access. We are punished for not ‘doing enough’ to manage our conditions when we are often offered no help in the first place and often have to fight to get what we little we do have. We are expected to compete in a system where we have been denied equal access (or any access) to education, training and employment, a system that in addition to denying us this access then says we are not good enough as we don’t have the education or training! Furthermore this is marketed as being ‘positive’ about disability and accessing the support we need to even attempt to participate as ‘equals’ is writing us off as ‘hopeless’ charity cases. This all casts disability and illness as a personal issue for the individual to overcome whilst ignoring the structural barriers we face in addition to illness and disability. It puts all the responsibility on the oppressed and none on the oppressor. This is neo liberal capitalist BULLSHIT. I can honestly say it is ruining my life and I am one of the ‘lucky’ ones.

In an interview with the Daily Mirror a former ATOS worker states “The system is set up as if disabled people are trying to steal something from the Government”. It is this level of mistrust, the practice of seeing people as criminal and asking them to prove otherwise that is so damaging. It hurts psychologically, indeed I would say it’s a form of psychological violence, it leaves people without the ability to meet their basic needs; food, shelter, medical care. It kills people. This goes far beyond saving money and deep into the realms of social cleansing, creating a society where people have to prove their humanity and that humanity depends on their ability to make money and succeed in a world where they face many barriers, yet those barriers are deliberately cast as personal failings as opposed to the structural oppressions they are. The rise of the biopyscho social model (another link here)with regards to disability and illness mirrors the rise of ‘bootstraps’ rhetoric that poverty is the fault of the individual and absolves wider society of any responsibility. In short, it’s bollocks.

This is, one reason out of many, why I am not a reformist. I cannot in good conciencse advocate reform of a system that thrives on oppression, a system that NEEDS oppression to survive, when reforms can only ever hope to mitigate suffering and oppression as opposed to eradicating it.  I’m not about asking anyone nicely to maybe give me a little bit of agency or power or to recognise my basic right to sustenance. They say you get more right wing as you get older, but I get more revolutionary. The more I see, the more I try to carve out a life in a system that sees me a nuisance and waste of money, the more I want to smash it. I can’t and don’t want to ‘lean in’ or some such bullshit, I cannot advocate for ‘equality’ within the existing social structures and systems because they are fundamentally unequal.

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I came across Unison’s ‘Decent Jobs  for All’ campaign today after seeing it mentioned in the letters pages or something like that. Whilst I applaud the aims of the campaign I can’t help but feel ignored. There is so much political focus on work those of us who can’t work get ignored, our status as unable to work seen either as faking it and thus we should be forced to work (or gently guided if you see yourself as more of a fluffy lefty, but it usually amounts to the same) or charity cases who deserve pity.

This  line from Unison boss Dave Prentis is especially stinging: “It ends discrimination against women, young people and migrant workers. Decent work with decent wages means people can live with dignity.”

This may be true but what about those who can’t work? Those who face ever increasing discrimination and demonisation from across the political spectrum? Where do we fit into this? Where is our equality? The citizen’s income is an idea I support as it places those unable to work on a more level playing field, with equal entitlement to the same basic income as those able to work, no special pleading for special benefits. Though those who need help with extra costs due to disability will be entitled, but the key point remains that everyone is entitled to the basic income, there is no marking out of the ill and disabled as ‘special cases’  who have to plead and jump through dehumanising and increasingly Kafkaesque hoops to be granted even the most basic levels of subsistence. I also question the necessity of paid employment, something which is outlined excellently by Latent Existence. Until more political movements, including feminism, move beyond the idea that everyone can and wants to access work and that work is what we should be aiming for,  I will feel ignored, erased. If we continue to present being in paid employment at a level you can support yourself without state help, part time work is stigmatised and people are encouraged to ‘find more hours’ or risk loosing benefits payments, and the limits for ‘permitted work’ whilst claiming disability benefits are strict and inflexible, further asserting that fact that work is something you should do all the time or be grudgingly supported if you can’t work. The reality for many is that work is something you want to do WHEN you can manage it, which is often sporadically, the choice of being able to work when you can and to be supported when you can’t is not an option.

When work is seen  as the marker of a ‘good’ citizen who ‘contributes’ to society, when work is seen as both a financial and moral necessity; we stigmatise those who can’t work. We increase tensions between those with disabilities who can earn a wage being held in higher esteem than those who don’t, creating a case of ‘divide and rule’ which [lays neatly into the hands of the government ideology of slashing benefits,  the old ‘if they can work why can’t you?’ supercrip trope is used to stigmatise those who cant work but whom society feels should be working, particularly those with ‘invisible’ illness or fluctuating conditions.  Or we deprive people of agency by casting them in the role of the poor little disabled person we should all pity, who we infantilise and whose existence depends on the charity of others, who should fit into the meek, submissive ‘good crip’  stereotype. Of course the accepted definition of ‘work’ is narrow, it means earning a wage to support yourself and ‘contributing to society’ means a narrow financial contribution through taxes. This belittles the contributions many disabled people who can’t work in the sense of being in regular paid employment, make in many different ways through volunteering, art, activism, being a friend, parent, spouse, partner all the myriad ways in which human beings contribute to society but do not earn a wage.

Paid work is not the only way to contribute to society and some people will never be able to undertake paid work yet are just as important to society; just as contributory, just as vital, just as HUMAN as those that do undertake paid employment. To focus on paid work as the main way to contribute to society is to erase the experiences of millions.

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This has been an awakening, realising I am nothing, that I have to beg , to plead my case for existence, it hurts, it fucking hurts. To see your right to access society on an equal basis, or even to access it at all, debated as a money saving issue by people who remain unaffected by any of the changes they wreak on others lives. This a barely coherent rant taking on disability, feminism, intersectionality and the festering pile of bullshit that is neo-liberal capitalist society.

My thoughts are still somewhat muddled, I am not well versed in political writings, I cannot quote any great thinkers on these matters but I have seen  how those of us who are ‘economically inactive’, or who cost more than we earn are portrayed, how we are demonised.

To say I have ‘no value’ or even a ‘negative value’ may seem harsh, but it is true. It’s a realisation thats been rather painful, after all we’re all fed this bullshit that we’re   all kind and caring and we aren’t like those barbaric other places we bomb. We’re fed this individualist bullshit from our youth, this ‘work hard and you’ll prosper’ nonsense. That if you are a good person you will be treated well, that only those who do wrong or ‘have something to hide’ will be punished.

(more…)

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