Tag Archives: Disability

The Last Post

  

Today is my thirty-seventh birthday and the first anniversary of my residency in England; it’s also my final post for this blog.

Right from the start, I’d always intended for Bean Love to be a year long project, so I’m really happy to have gone the distance with it, even if I did go a little off topic a lot of the time.   

Back in the summer of 2014, when I decided to chronicle my house move from Renfrew’s concrete jungle to Sudbury’s soporific pastures, I knew that I would also be embarking on an intense psychological journey that would not only catapult me, as a disabled person, into a greater state of independence, but it would push me to diversify my writing even further as well as making or breaking my relationship with Antonia. I wanted to record my journey in a way that I could share it with people back home who I was unlikely to see for a while, which is why I chose to make the blog public. I’d also just finished reading Alison Bechdel’s ‘The Complete Dykes To Watch Out For’, and it reminded me of some of my friends and what I call the ‘Bean Scene’, and I was tickled by the idea of writing about queer culture and the way we gay ladies often perpetuate lesbian stereotypes ourselves.

Antonia, the wee delicate flower that she is (or was) said that moving to Glasgow was a ‘culture shock’ for her: she’d never before been exposed to the grittiness of West Coast living, nor had she encountered off-licenses with electronically-tagged Buckfast bottles; she’d also never heard anyone refer to their friend as a ‘cunt’ by way of friendly greeting and, as a result, she gained a whole new vocabulary in the three and a half years she spent there.

But was it a culture shock for me? Well, yes and no.

Sudbury is different from both Renfrew and Glasgow in lots of subtle ways: for instance, a garden here is not a garden unless it is at least half an acre, and most people talk ‘proper’ English and can’t understand half of what I say; there aren’t many buses in Sudbury either, because not many people need to use the bus – Antonia says most folk in this town wouldn’t even consider having less than two cars per household and that her family (of six) once had half a dozen cars in the driveway, and that was when two of them couldn’t even drive. Then there’s the ladies at the tennis club, who were terribly offended by the whole Scottish independence thing because they couldn’t understand why ‘but why?!’ Scottish people wouldn’t want to be in the United Kingdom. Of course, everyone is Sudbury is perfectly polite and nice to me – at least to my face – and on one of the two occasions I’ve heard someone shouting in the street here, one of the culprits sounded like they were from Govan.

Much like Renfrew, there’s not a big bean scene in Sudbury, nor is there a vegan one. But I know we’re not the only queers or meat avoiders in the village because I’ve seen a few lady-couples tramping around town in their wellies and Barbour jackets; and after recently joining the Suffolk Vegan group on Facebook, I’ve discovered there are a few fellow herbivores hiding in plain sight in Gainsborough Street’s ‘Niche Café’ behind their super salads. There’s also not much going on in terms of literary events and networks; and after my own attempt to start up the ‘Breakfast Writers’ Club’ failed, I joined the over fifty-five’s group at the library (and so far no-one has complained that I’m nearly two decades too young).

If my recent trip back to Scotland has taught me one thing it’s this: I am incredibly lucky to have lived in a place that allowed me easy access to the various diverse communities that helped shape the person I am today; and this, in turn, has prompted me to think about going back more often, as well as making me want to put more effort into venturing out into London and some of the other East Anglian towns in search of my tribe.

Overall, I’m stepping up my game in the coming year: I’ve been invited to an interview in East Acton with prison arts organisation the Koestler Trust, and I’ve posted my application for an eleven-week course aimed advanced writers in Covent Garden; I’ve also just signed the lease on my apartment for another year. And whilst, this may be my last post on this blog, I’m not saying I’ll never blog again, nor am I saying this is the last you’ll hear of Bean Love… a wise friend recently suggested that I should consider rewriting it as a work of fiction… and, you know what, I just might do that…

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Bean Damage

Recently, I began talking to a woman on Pink Sofa* who suffers from a mild case of prosopagnosia. In other words: face blindess. Oddly, it’s a lot less rare than people think, and up to 2.5% of the population (including Brad Pitt, and Oliver Sacks – the neurologist who famously wrote a book of essays entitled ‘The Man Who Mistook His Wife For A Hat’) have this condition, where they have an impaired ability to recognise people they have met before, even their own friends and family.

There are two types of prosopagnosia: congenital and acquired (either through stroke or brain injury). In Sacks’ case it was hereditary. I’m not sure about Brad Pitt, but I suspect he was probably born with it too. My friend on Pink Sofa was in a car accident; and her symptoms were so subtle that she didn’t think anything was wrong with her, until she realised that two new acquaintances she’d recently met at separate slimming clubs, were actually the same person AND this person was a work colleague.

The thing is, even though I mostly struggle with other aspects of visual processing such as topography and spatial awareness, I can strongly relate to the difficulties that people with prosopagnosia experience: For example, I have lost count of the number of the times I’ve bypassed people in the steet who I’ve simply not recognised; or I’ve tried to talk to a complete stranger because I thought I knew them; and often people will accost me in the street, and I’ll find myself nodding and agreeing with them and pretending I know who they are and what they’re talking about, because it’s easier and less embarrassing to say otherwise. Because people often get very offended when you don’t remember them. And they think it’s because you’re rude or self-obsessed or (at best) uninterested in them, especially if you’ve met them more than once.

Years ago, I left my then-girlfriend waiting for me outside a shop in Glasgow Buchanan Bus Station whilst I went to use the loo, and when I re-emerged I couldn’t find her because I not only forgot which direction I was meant to be heading in, but what she looked like! She was mortified to say the least and she ranted on at great length about how she couldn’t believe I’d walked right past her, and how could I not recall her

She just didn’t get it. But then most people don’t. Which why it’s often easier to just feign ditziness, to pretend you’re busy in your own wee world.

Another thing that me and my new friend from Pink Sofa have in common is that we both have difficulty following films and TV programmes. Usually I muddle through, relying on accents, hairstyles, clothing and distinctive hats, but there have been a few things I’ve found particularly challenging to watch: ‘The Passion Of Christ’ was one of them – simply because the characters were mostly middle-aged men with beards and I couldn’t tell which one was Jesus! Another was the American gangland drama, ‘The Wire,’ because most of the characters were all young black men with cornrows and I kept getting confused with who was in who’s gang; the principal detective was white so I was able to differentiate between him and the people he was trying to arrest; it was a wee bit trickier, however, with the two leading ladies in the show who were both red heads.

Whenever I go to potlucks or social gatherings I try to transfer my TV-watching strategies to recognising people I’ve already met, but you can’t pause or rewind real life; and as Antonia recently pointed out ‘people don’t always wear the same hat’. They don’t always have the same haircut either; and there’s always the chance that someone I know will get a mohawk or dye their bonce a different colour and if that happens I’ll just have to deal with it as best as I can.

And if I do happen to dither on past you as I’m trying to navigate around town, please don’t be insulted. And, if in doubt, do re-introduce yourself.

Steffi Baby

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Ten years ago, I began seeing someone who had a small child from a previous relationship. It was unchartered ground for both of us because I had little experience with children, and she had none with lesbianism. We muddled along though, and it certainly was a learning curve – in fact, the person who taught me the most was Steffi, my ex’s little girl.

Anyway, when we broke up I was devastated. Not because she was the love of my life (looking back now, she was far from it) but because by having a child she represented a sort of normality for me, and a hope that society would see us as a sort of quirky (if not slightly dysfunctional) little step-family; and also because she was the only person I’d ever brought home that my mother had actually really liked.

I got through the break up the only way I knew how: I wrote about it. I wrote in long-hand in a stream-of-consciousness style, rarely stopping or crossing anything out; and I did this in a variety of cafes and bars around Glasgow, and occasionally in front of the TV whilst the KISS channel with it’s raunchy R’n’B sounds was pounding away in the background. My favourite songs from that period quickly became ‘Fuck It (I Don’t Want You Back’) and ‘F.U.R.B.’ (Fuck You Right Back’) and I think that speaks volumes for my maturity at that point in my life. At the end of three months, however, I had a lighter heart and a full notepad (not to mention a tentative new love interest); and when I typed up what I’d written (pretty much verbatim) I had a novella that was just shy of 40,000 words. (Now I have never been able to write so ferociously or fluidly since than, nor have I ever again been able to get a whole story out without multiple stops and starts. But neither am I suggesting that I have to be going through an emotional uproar to do so.)

‘Steffi Baby’ is a story about Debs, a young, single mother in her middle twenties who is struggling with an anxiety-related disorder which confines her indoors and often to her bed.   It is narrated by her daughter, Steffi, a highly-sensitive and strong-spirited four-year-old, who is blissfully unaware that her mother’s new best friend, Alice, is actually her lover.

This novella is a far cry from autobiography, and although there are parts which were inspired by real life events I preferred to stretch my imagination and write about what could have happened rather than the things which actually took place. It was also never meant as a way of getting back at my ex – and I suppose in a way I am really paying homage to some of the good times we did share. I chose to tell it from Steffi’s point of view because it was too painful (and, frankly, too boring) to tell it from my own; and also because Steffi’s innocence and unrelenting optimism bring humour to what could otherwise have been a rather bleak tale.

Before Xmas, I began redrafting ‘Steffi Baby’ again – I’d previously attempted this back in March but found it was too difficult to finish at that time. This wasn’t because it threw up any unpleasant memories for me – on the contrary, it reminded me of quite a few episodes that made me laugh out loud. I simply struggled with the chronology and the picking apart of an already very tight story.

I’ll admit there have been times when I considered giving up on it completely: that old chestnut ‘no-one reads / publishes novellas anymore’ rattled around in my head; and only yesterday, I was so frustrated with one particularly problematic chapter that I printed out all twenty pages of it before physically cutting and pasting the sentences together; I was also slightly worried that I would be accused of trotting out yet another niche-interest piece of fiction that only lesbians of Scottish nationality would ever read.

I am pleased to report that I am now about ninety-eight percent of the way through the redraft. There was loose talk of me writing a sequel, but I’m not so sure. Antonia thinks I should. We’ll see.

The real Steffi was fourteen this month and I can’t believe where the years have gone. I suppose she will stay forever four years old in my mind. I doubt I will ever cross paths with her again, but wherever she is in this world I wish her and her mother all the very best, and hope that they are happy and well.

Coming Out Processes

Coming out as vegan might have been harder than coming out as gay, but coming out as brain injured is even harder. I was reminded of this today whilst filling out a ‘limited capability for work’ form for the dwp: one of the categories on the form concerned itself with asking about my social life, or more specifically how I survived ‘coping with social situations’.

Now, it may come as a shock to some people who know me, but the truth is I have a significant lack of self-confidence when it comes to going out and meeting new people these days, and this is largely because I’ve learnt from the mistakes I’ve made and the dicey situations I’ve gotten myself into in the past when I’ve been out.

Deciding whether or not to disclose my brain injury to new friends and acquaintances is and always has been a major cause of anxiety for me: usually, if I disclose my brain injury, people either feel sorry for me or they avoid me because they don’t want the burden of being around someone who has a disability. But if I don’t tell people, then interacting with them becomes awkward because I constantly have to make excuses as to why I don’t have a job or children or any of the other normal things that most people my age have in their lives – the only saving grace is that people often (wrongly) assume that being a lesbian is the reason I don’t have a family.

In the past, I have played down reoccuring problems such as getting lost (sometimes for hours) inside pubs or night clubs; and I’ve often made jokes out of my inability to being able to find the toilet or the bar on my own. And sometimes it is funny. But sometimes it’s just not.

It’s even worse when people I am socialising with decide that they want to change venue while we are out. When this happens, I am faced with an entirely new dilema: I can either make my excuses and go home early (like a right killjoy), or I can follow them to a place where I am in potential danger because of my topographical memory impairment*. In the past, I have gone along with others’ suggestions on the basis that someone else has said they will help me to get back home, and as a result I have ended up seriously lost and bewildered (because although a lot of people mean well, they just can’t grasp that I really don’t remember how to walk to my bus stop or that taxi rank we passed that is just two minutes walk away; and they’ll often trot off and get drunk and then forget all about me). Because of this I don’t go out at night on my own or to places that I haven’t been to before.

Sometimes when people later find out from someone else that I’ve had a brain injury, they often become annoyed, hurt and offended because I have hidden things from them and lied by omission. I’ve been called ‘irresponsible’ for not making them aware of my memory deficits, and perhaps they’ve got a point. But why should I have to come out?

No matter what I do, I often feel socially isolated.

* Topographic memory involves the ability to orient oneself in space, to recognize and follow an itinerary, or to recognize familiar places.

Blank

Recently, I’ve been toying with the idea of writing a second memoir.

I thought I might call it ‘Blank’ because as well as the obvious connotations it has with writer’s block, it also relates to gaps or ‘blanks’ in one’s memory, and to the ‘blank’ expressions I am often accused of wearing.

My first book, ‘Cracked: Recovering After Traumatic Brain Injury’ was launched in December 2002 by Jessica Kingsley Publishers, and in it’s two-hundred-and-twenty-four pages it documented the early years following my accident: from the initial struggle to receive a diagnosis, to my incarceration inside an adolescent psychiatric unit, and my eventual descension into bulimia and anorexia, as I failed to cope with school and exams and ordinary teenage nuances on top of memory loss and other cognitive impairments; before, finally, recounting the positive search for a new identity as I learnt to accept my limitations.

I was young when I wrote that book, and if I could go back and pen it all over again I’d definitely do it differently. I’d mention some things that I left out, and leave out a couple that wormed their way in. I’ve been told that it helped a lot of people (both brain injury survivors and their families, as well as doctors), and that pleases me because it was not originally written with publication in mind; because writing for me was simply a cathartic outlet, something I did to make myself feel calmer, and to understand myself and those around me a little better. However, I also noticed that ‘Cracked’ had received a one star review on Amazon last year by someone who said it was ‘a ridiculous waste of money’, and who claimed that it provided no insight for them into the condition at all. Well, whilst I’m inclined to be of the mindset that you simply can’t please everyone, I do concede that, perhaps, the book only described the tip of the iceberg when it comes to explaining what living with traumatic brain injury is like, and that a sequel is in fact long overdue.

I was not out as a lesbian at that time – in fact, I was only in the early stages of realising and understanding my sexuality – so I didn’t have to navigate my way around a countercultural gay world with it’s separate customs and fashions, as well as the usual mainstream one that was already highly confusing. Neither did I have to put up with others’ desexualisation of me or the assumption that my girlfriend was simply a carer.

I was also still living a rather sheltered life at home with parents, free of financial worries and responsibilities; and aside from a weekly paper round, a trial run as a silver service waitress, and an unpaid work placement via the brain injury rehabilitation centre I attended, I was completely ignorant of the world of employment and it’s complexities.

Being a person with a brain injury hugely affects the way I react to the world and in turn the way the world reacts to me: I spend a lot of time nodding and agreeding with people simply because it’s easier (and often less offensive) than saying, ‘I haven’t got a fucking scooby what you are talking about.’

 

It’s also a lot less tiresome than making the effort to tell people that a) I have had a brain injury, b) most people with brain injuries have trouble receiving and processing information (which basically means it takes longer than average for words to sink in) c) because it takes longer for words to sink in I’m still thinking about the first part you said so I’ve totally missed the second, and d) I don’t understand what you’re saying because of a), b) and c). Of course, usually when I have to explain that, I either forget what I’m saying half way through or said person gets bored and cuts me off midspiel by saying something completely dismissive like: ‘oh, that happens to me all the time’.

And believe me, having someone who has never had a brain injury tell you that they / their mother/ father / dog / most people they know have trouble understanding what folk are saying, is a bit like being vegan for seventeen years then having some clown who recently gave up red meat and dairy (‘except cheese’) tell you they are ‘basically vegan’ too.