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.
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.”.
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.
I’ve signed up, a few days late due to my impeccable organisation skills, for NaBloPoMo at BlogHer for Feburary, this month’s theme is ‘Perspective’, one which I think fits well with this blog.
For this first post I am going to write on something that has been brewing in my mind for a long time.
Perspectives on physical and mental illness, what it’s like having both.
I’ve always been bookish, I’ve struggled like hell with maths and spelling but reading and writing, it’s been my thing since I was tiny. I’ve always been a wordy child. It’s why I started blogging about my depression and M.E and feminism and my views on everything, it’s how I feel comfortable expressing myself.
So when I get into the dull brain period of depression, the phase the doctors don’t see anything wrong with because I’m ‘stable’ even though I’m numbed inside and I can’t THINK, like really think for hours upon hours, have those words spiralling out like a burst pipe, it feels alien. I feel like I’m only half of me. I haven’t been able to really concentrate on a book for ages. Months, maybe a year. I’ve been reading stuff for work and struggling to concentrate on chapters, citations, articles. A whole book from start to finish has been beyond me. I used to never give up on books, never leave them unfinished but lately it’s all I ever do.
But last night it felt like my brain was waking up again. I had words, thoughts, ideas spinning round my brain. Sure I couldn’t sleep, it was 4am and I had to write things down before I could let myself sleep, but I felt part of me waking up and it felt good. I actually feel in the mood to curl up in bed with a book and it’s been so long, it feels amazing.
That’s one reason why depression is so hideous, it not only makes you feel like sticky cold tar or a withering leaf but it stops you enjoying things, little things, simple things you never used to think twice about. That is one of the most soul sappingly awful things to deal with, the feeling of ‘depression’ itself is fucking easy compared to this parasite that takes over and stops you enjoying things you used to love, sometimes it goes beyond the anhedonia of getting no enjoyment out of things you once found pleasurable but it can make you unable to even do them in the first place. The cognitive numbing or whatever they call it is one of the hardest side effects of anti depressants to take, I’d much rather be gross and sweaty and put on a bit of weight that feel my brain turning to that fluffy stuff you insulate lofts with. Yet it’s the one side effect my psychiatrist just doesn’t seem arsed about, not that he ever seems arsed about much. It’s hard to explain exactly how bad this lack of concentration can be, it essentially stopped me working for a month ffs, it’s not just some everyday distraction , it’s like a fucking behemoth of distraction and noise that can’t even focus on the words on the page long enough to recognise they are words let alone take any of them in.
This past has been easy to write, I’ve not really though about what I’m writing, it just sort of comes out. It’s exactly this sort of stuff I’ve missed.
Thank god for twitter and blogs though, the shorter nature of it all has meant I’ve been able to keep up a bit and still read, still debate.
FYI if anyone’s on good reads – say hello