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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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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Inspired by Reni Edo-Lodge’s excellent piece on Feminist Times and the backlash/’debate’ on twitter (I cba to link to it, esp as a lot appears to be ganging up on one woman so fuck ‘impartiality’)  I’m going to share my thoughts on this whole ‘shared girlhood’ and ‘common experience of woman-ness’ ideology that’s been going around.

Yes there are many common experiences many women across all backgrounds face; but do we ALL face them? And do we all face them in the same way? No. I am all for solidarity, I think it is vital women can talk about their shared experiences, I feel there is power in what you could call ‘consciousness raising’ BUT when that gets turned into a reluctance to acknowledge all the experiences facing women, especially those that intersect with other oppressions such as race, gender identity, disability and sexuality, it feels less like solidarity and more like being picked on for being the ‘odd one out. those with experiences outside the white-cis-abled-hetero-middle class experience are shouted down and effectively told we’re not ‘normal’ so our experiences ‘don’t count’ towards the magical ‘shared girlhood’.  It must also be noted that much of the ‘shared girlhood’ and talk of ‘safe spaces’ has been engineered to specifically exclude trans women and comes from a place of transphobic hate, yet in addition to this there are other issues with the concept of ‘shared female experience’ that exclude many women on the grounds of race, sexuality, disability , class etc.

I’ve been questioning the idea of some universal ‘shared girlhood’ from my personal perspectives due to disability etc for a while and acknowledge that different women experience different things or experience the same things in a different way due to various intersecting oppressions yet not once has it ever, EVER been a case of my ‘denying solidarity’ or whatever crap excuse for being racist, transphobic, disablist gets trotted out. It’s just the way I have experienced things.

In my own experience many of those ‘milestones’ of ‘shared experience’ happened very differently for me. Take periods, which are far from a ‘universal female experience’ anyway, in addition to the whole getting used to this weird new thing happening I had speculation about my health; would I be OK now I had my periods? Was my (as yet undiagnosed) M.E ‘just puberty’ and would it be OK now I’d started menstruating? I remember the overheard whispers about it all adding to the weird psychological stuff going along with all the ‘mysterious illness’ stuff.

Likewise street harassment and sexual harassment has been off and on for me, I have experienced it at times as a white cis woman who can pass as abled, yet I haven’t experienced the years or it happening on a constant level or those early interactions through your teens when you’re discovering sexuality, in my teens when I was supposed to be going out partying and ‘discovering’ boys or girls or whatever I was stuck at home. I have also had periods of being visibly disabled due to using aids such as a stick or wheelchair; believe me you don’t get the same experience if you’re being pushed along by your parents. In fact due to disability a helluva lot of my ‘shared girlhood’ or ‘universal female experience’ has been pretty solitary, I didn’t really enter ‘womanhood’ or whatever you want to call adolescence and early adulthood sharing anything much, a lot of that formative ‘shared experience’ for me consisted of being alone.

In talking about the ‘shared female experience’ we need to acknowledge that a ‘shared experience’ may not be universal and it is likely to be experienced in vastly different ways. We cannot assume a baseline of familiarity that is the same of everyone and discussions and shared spaces that assume this are by their very nature exclusive and unwelcoming, besides the fact that many can’t even access them in the first place for whatever reason.  They become vastly more exclusive and unwelcoming when women are harassed, insulted and told they are being ‘divisive’ or that they don’t care about ‘unity’ for questioning the universality of these experiences and demanding their own experiences are allowed space to be shared and discussed too. WE cannot assume that ‘women’s issues’ are  universal for all women; for instance I feel a lot of mainstream feminism and discussions around women in work are as relevant to me, a woman who cannot work full time and will probably never have a ‘career’, as a discussion on the merits of what tent is best to pack for an arctic expedition or a discussion on the place of women in the world of sky diving. Yet I have no problem with women discussing these issues as they are relevant to many women, my problem is when certain issues become seen as ‘universal’ when they are not and when other issues get sidelined and when women do want to discuss other issues  many make it clear that they DO have a problem with this.

I suppose what I’m trying to suggest is that ‘shared’ does not have to equal ‘the same’ and it is ok if we don’t all share everything. A safe space makes space for different experiences, listens and is willing to face up to the flaws of itself and those within it. It does not insist on silence and repression for the sake of ‘unity’. It does not recreate the hierarchies of the systems it claims to be against. Safe does not mean comfortable, and comfort for those with privilege should not come at the expense of those without, and all of us should be willing to acknowledge that we can be privileged and oppressed at the same time; for example asking that we acknowledge cis privilege does not negate or seek to ignore the oppression suffered by women at the hands of patriarchy, it just acknowledges the oppression of transphobia. I don’t have any instant solutions for a magical pop up safe shared space of wonder, these things take work.

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So I turned 30 recently. I’ve never really been a fan of birthdays as they tend to remind me how long I’ve been ill, around 19 years now, more than half my life. Time is a funny thing and it seems even more melancholy when you’re ill. All those milestones everyone assumes just happen often don’t, or they happen in convoluted ways. The whole school uni job career marriage kids thing that seems so ‘normal’ becomes impossible or at least very tricky. You see everyone else rush off and do all these things almost by default and you’re just stuck. You feel like you’re in stasis but time is still passing, you’re getting older, the world’s going on and on but you’re just there; existing in a wallpapery sort of fashion.

Things start off with everyone saying stuff like ‘when you’re better’ then after a few years you realise that might never happen so people stop mentioning it. Due the cult of misguided ‘positive thinking’ in our society things like ‘well what if I never get better?’ are often ignored and you learn to not mention it or at least not mention it too much. You feel like you can’t really discuss it openly and it’s certainly not accepted to discuss it at the marathon lengths others discuss pensions, property and career ‘ladders’ and all the other more acceptable ‘worries about the future’ stuff that eats up column inches and politicians pander to. You’re supposed to have ‘aspirations’ and plans not be worrying if you can cope with the basics of everyday life. The whole planning for the future thing is even more terrifying, it’s not about mortgages or kids or any sort of bloody ladder or long term investments or upsizing or downsizing; it’s about ‘what the hell am I gonna do if I can never work enough to support myself?’ and ‘how the hell am I supposed to look after my parents when they get older if I can’t look after myself?’. On the plus side the likelihood I’ll ever earn enough to even start paying off my student loan is slim.

It seems this positive thinking lark is often for the ease of the people around you, avoiding facing up to the harsh reality that life can sometimes be utterly shit. I’ve always been known as a bit if a gloomy soul, maybe it’s because I was ill at a young age? Or perhaps I’m just naturally miserable and Eeyoreish. The donkey is wise indeed:
“Nothing, Pooh Bear, nothing. We can’t all, and some of us don’t. That’s all there is to it.”.

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After being fed up the dr and psychiatrist never listen to me I decided to reduce my medication anyway, I was tapering due to the usual being disorganised with repeat prescriptions and felt ok. So far I am feeling my mind is more alive but I feel a bit up and down but I’m not sure if that’s meds or the result of life stuff, being very busy then having not very much to do; I always tend to feel a bit weird when that happens. Time will tell as always. But I’ve been able to write creatively again which is amazing, less so when it keeps me awake at night but I have missed it really having a brain instead of porridgey lumps.

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