Thoughts on being ill in 21st century Britain

‘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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Some Poems

Because it’s National Poetry Day 2014, I thought I’d break my blogging silence by posting some of my poetry. And by ‘poetry’ I mean a stream of consciousness of rage and emotion rarely fitting into any neat style, bad spelling and all, just raw words spurting out. So three little poem like creatures:

The Flood

It comes up from nowhere
Wells up breaches all my defences
Deluge inundation
I’m saturated, heavy with sediment
Not life giving
But stagnant red

Targets

I used the word existential
Said I must be intelligent
None of your therapy
Got me out if this predicament
Said I wasn’t complying
When I just wasn’t lying
I honestly just couldn’t see
Any reason logically
Any event, any thing
That had me feeling like I did
Even mental illness has to conform
Fit into a small box on a form
In 16 sessions , no more
I see why they call it a revolving door
5 years later I’m here once more

Think I’m just not meant for this world
I see too much, feel too, much get hurt
I try so hard, but can’t describe it in words
It’s in the bit of me that’s primal
Something in here fighting for survival
That predates language & expression & words
So elusive it feels like a curse
That part if the soul, so deep, so old
So much more than I can ever know
I get joy too, but it’s this sadness that shows
That drags me down so far below
Down deep to the centre where magma flows
To the kernel of everything we know

If course I can’t make it easy to explain
Or find a concrete reason for this pain.
You can’t make my soul about targets.

Some Kinda Clarity

As my mind clears I start to write poetry
Blessed relief to feel the words flow through me
After months of a stagnant mind silent inside
A pretence of stability just hiding the misery
Of being cut off from the vitality inside of me
As the fake chemicals reduce , removing the sluice
Letting it all flow loose
Embrace the flood
Renewal – new life from the alluvium
A World springs from the watery nuum
After the flood all is reborn
After the flood creation
Destruction then Personal Cosmogony

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Anger

I am angry, as I am when the world just gets too much, when all the oppressive shit just seems never ending and you feel hopeless and you can’t quite formulate anything beyond a sort of screaming frustration.

I’d say I’m pretty much apoplectic right now. So I’d like to talk about anger and how I don’t think it’s a bad thing.

Anger is not a bad thing. Anger is a valid emotion. Anger is a response and it’s a lot easier to chastise people for being angry than to look at why they are angry. Especially as it is often the more privileged casting judgment on the less privileged.

I’ve spent a lot of my life trying not to be angry. Believing I should play along with the good girl role I was assigned, you know quiet, shy, reads a lot of books, gets good grades blah blah. The policing of anger is really sneaky and insidious. You get told you’re a ‘good girl’ you shouldn’t be angry, that you’re ‘too intelligent’ (though don’t get me started on ‘intelligence policing’ – when people tell you you’re ‘too intelligent’ and you should dumb yourself down because you’re  just being difficult now and you’ll never attract a man if you keep using long words etc etc, whatever it’s all part of the same silencing crap). I’ve been told that swearing is a sign of a small vocabulary and low intelligence, that no one will listen to you unless you ‘ask nicely’. But it’s all bullshit, or bovine faeces, or dudely cattle droppings or whatever my tiny vocabulary full of un-ladylike profanities decides to call it. Now I’m not saying everyone should go round being mean to everyone, but the whole passive niceness as the ideal way to behave is a form of subjugation.

I’ve realised as I grow older and angrier that actually I have every right to be angry. That the policing of my anger is just that, policing. That it’s designed to stop dialogue. It’s derailing. It’s the imposition of arbitrary standards of politeness that never seem to apply to white, abled, heterosexual cis men, who for the sake of brevity I’ll just call ‘white dudes’ from now on. White dudes have ‘debates’ they’re ‘opinionated’ ‘outspoken’ and all sorts of rugged and wholesome manly adjectives that enforce their status as accepted and listened to.  Everyone else is just ‘angry’. Or we have an ‘agenda’ or we’re ‘hysterical’ or ‘bitchy’ or ‘whiny’ or ‘ungrateful’ or a slew of similar terms designed to undermine not only our arguments but our very humanity and our right to make these arguments in the first place. The whole ‘rational objectivity’ is a white dude concept that’s full of implicit bias; it ignores the fact it’s an enormous privilege that is far from the ‘default’  to be able to debate ‘issues’ in a detached way, because they don’t affect you personally.  There is a tangle of implicit sexism, racism  and classism within the set up of white dude logic. White dudes are the pinnacle of objective reasoning; they don’t get ‘too emotional’, they’re not ‘uncivilised’ they speak ‘proper english’ and they do things ‘properly’ (which as well all know means ‘done by a white dude’). White dude logic pretends to be ‘objective’ but it demands everyone engage with it in an innately white dude way.  In white dude logic ‘taking it personally’ is a bad thing, but what else are you supposed to do about an issue that affects you, as a person?  Why are emotions bad? Does the fact I feel angry about whatever oppressive crap I deal with as a disabled woman mean that I am incapable of intelligent thought? Or is it just a load of crap designed to exclude more diverse voices from a system that benefits white dudes? Why is it so common to hear thing like ‘well YOU would say that’ directed to women, people of colour, LGBT people, disabled people, anyone not on the throne of white dudely privilege? You rarely hear ‘well YOU would say that you’re a white dude!’ in the same sneering tones.

To not be angry is a privilege. I’m angry because I feel under attack. Because I am under attack. From patriarchy, from kyriarchy. From a government and society that sees people like me as a ‘burden’ and ‘scroungers’ , from supposed allies who think that raising our voices is ‘divisive’. I see others under attack too, every day all over the world and being the soppy bleeding heart I am who actually gives a shit about humanity I get angry about that too.

Also as someone who has mental health problems, I am acutely aware that the policing of emotions is a very bad thing indeed. Part of my problems stem from the fact society doesn’t really give you a space to be angry about this stuff, that it enforces some sort of emperor’s new clothes ‘positive thinking’ bollocks on you, ‘Smile or Die’ is an amazing book on this topic, go go go read it.This is something which is especially prevalent with regards to disability and the ‘super crip‘ ideology. I had a youth of endless ‘think positive it’ll help you get better’ stuff thrown at me and I felt I didn’t really have any place to explore and get angry at the fact that being ill really, really sucks. Further more there is even less space to freely vent about how the fact that being ill really sucks is made so so so much worse by all systematic the ableist crap foisted on us by society that is deeply prejudiced against disabled people and sees us as either a costly nuisance or ‘inspiration porn’ for the benefit of abled people.

Basically, having your whole life go to crap is hard. It was always geared towards thinking of ‘when you’re better!’  and less about facing the shit right now. But whilst I am a lot better than I have been, I’m still ill and have been for over half my life,  I don’t have much hope of a ‘normal’ ‘well’ life but I’m ok with that. I think a lot of this stems from societal ableism that views disability and illness as such a bad thing and that we must always be ‘fighting’ it even if it makes much more sense to accept it and live your life as a perfectly valid human being as it is.

In short I feel all this ‘don’t get angry it’s bad, think positive!’ stuff is about compliance. It begs you to be a good, compliant little person who accepts their shitty lot in life and never complains, never questioning the rampant inequality of society. To ‘know your place’, except my place is right here being as angry as I want to be.

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M.E Awareness Day

I thought I’d better write something, even if it is jumbled and not as astute as I’d like; brain fog is rampant today.

I’ve had M.E for most of my life, since I was 11. I’m now 30. I’ve gone up and down, I’m currently in an O.K mode, I can fake being normal for a bit and do stuff like get out the house and enjoy myself, however I’m still ill. Every so often I convince myself I’m not and that I’m just being lazy and if I really pushed myself I’d be fine. I’m sure this is down to the crap I’ve internalised from years of being told I wasn’t ‘really ill’ and I just needed too try harder. Ironically I’m having a bit of a bad day today as I had two days in a row where I didn’t have my usual ‘siesta’ big nap in the middle of the day thing. It always takes a while to catch up.

I’m at the point now where I don’t think about recovery, I’m just trying to live my life in a way that I can manage to do some stuff and just cope as best I can. This is made immeasurably harder by the constant stream of ‘scourger rhetoric’ from this government and the media. I’m currently in bind as to whether I can work or not and if I can work enough hours to qualify for tax credits or if I can do permitted work on my benefits.

I also have depression. I have often felt I am in a difficult place as there has been, and continues to be, some prejudice within the M.E community around mental illness. It is no secret that M.E is not a mental illness and should not be treated as such but often some go too far in their assertions and stray into stigmatising and insulting language around mental illness; saying things such as ‘I’m really ill it’s not ‘just depression‘ ‘ or ‘M.E is a real illness’ – the subtext here being that mental illness is not ‘real’. I have no patience for that and I have yet to see any valid excuse for it.  I have blogged about it before and it is something that makes me feel unwelcome in many M.E support communities. Thankfully I have found some amazing support via twitter and I suppose it’s been so long I’m just sort of used to bumbling along on my own.

I’m not going to write some twee crap about illness elevating me to a state of saintly insight and use metaphors about ‘journeys’ and ‘tunnels’ and ‘woods’. I’m certainly not going to write a terrible poem.Or insinuate bullshit like ‘there’s a personal agency in getting better’ or become god forbid it ‘inspirational’. But I have M.E, it’s shit, the government is trying to cut support to people with disabilities and chronic illness just like myself. I’m not a scrounger. I’m not making it up. I don’t live a life of luxury on benefits. I have paid taxes. I am actually ENTITLED to support because thats the whole point of the welfare state so yes I do believe in a ‘culture of entitlement’ . I am also entitled to respect as a human being regardless of how much I earn or if I work or if I poop out sparkly rainbows or whatever.

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Blogging Against Disablism Day 2014 – Invisible Disability – disablism from different perspectives

Today is Blogging Against Disablism Day so I am going to participate by writing some of my thoughts, rambling as usual, about invisible disability and ‘passing’ as abled and issues with identifying as disabled when you, to use a much hated phrase, ‘look normal’. I ‘look fine’. I don’t currently use any mobility aids, though I have done in the past. I can easily ‘pass’ as abled and this sometimes makes me feel like I never quite fit in anywhere. I have been attacked in the past, see some of the lovely comments on this post for example, for not being disabled enough and told it’s insulting for me to claim the label and I have questioned referring to myself as ‘disabled'; partly over issues like this. I’m not mentally strong enough to cope with the antagonism so I’d rather be a wimp and avoid it. But according to the UK legal definition of disability, I am disabled. I live with chronic physical and mental illness (M.E/CFS and a chronic depressive disorder) that have a substantial impact on my ability to live my every day life. I feel that maybe some of my reluctance to use the term has been down to internalised disablism and trying to convince myself that I won’t be ill for ever and one day I’ll be ‘normal’ again. At the time of writing I have been ill for the best part of twenty years, the majority of my life, so I’m not quite convinced of the temporary nature of things and have pretty much accepted that my chronic illnesses are a disability that will probably be with me for the rest of my life, though they may have good and bad patches. I also live with a lingering anxiety that I am seen as a ‘dirty scrounger’ or ‘malingerer’ or ‘work shy fraudster’. This has only increased in line with the governments attacks on disabled people and the benefits systems well as the media complicity in all of it. There is a general idea within society that ‘you can tell’ if someone is ill or disabled and those who ‘look fine’ are fine. There is a very narrow understanding of disability in society, which for the most part excludes invisible disability. Conditions such as depression (check), M.E (check), bad backs (I’m ok on that one so far) and other invisible disabilities are often used as journalistic shorthand for ‘faking it'; often accompanied by ‘scare quotes’. In the popular imagination of of modern Britain people with invisible disabilities are just ‘putting it on’ and waiting for a huge benefits cheque whilst we lounge around our mansions watching massive flat screen TVs, fabricating imaginary medical conditions to con the ‘tax payer’ out of money. It feels like I see two sides of disablism; I am privileged as I can appear abled so I am not subject to abuse for appearances and as I ‘look fine’ I hear things people wouldn’t say if they knew about my disabilities or if I was visibly disabled. Yet at the same time I face a different sort of prejudice from being invisibly disabled, one of disbelief. I look fine so I must be fine. I don’t need a ramp to access anywhere so everything’s ‘accessible’. I suppose it feels like I experience disablism from both an outsiders and insiders perspective, or from some muddled area in-between.

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