June 16, 2019 § 1 Comment
I’m currently adapting to a new situation, which for some autistic people can be tough to handle. The need for time in which to integrate patterns and routines is not something I’d identified before my diagnosis of autism in 2016.
Now that I know about it I can follow the ups and downs of what I will l call my wrong-footings like the contours of a map. I’m almost in sync with my own discomfort (gasps from the gallery!) which is not supposed to be that common. Isn’t autism a ‘being out of sync’ thing? In some ways yes…
Yet, I’m not where I was pre-diagnosis, which is why I’m keen on identifying as autistic. It helps me manage life in ways which are beneficial. Building a set of strategies is key, I feel.
I’m suddenly part-time caring for my mum who is 93, and after a long lifetime of coping, is suddenly frail and in need of 24/7 care. It began with a punishing two week stay in hospital. My sister and I took shifts and made sure she was never unattended even at nighttime.
Autism made this a challenging job in some ways, but it also enabled me to maintain my focus on mum. I understood that I could tackle the rigours of a large and busy ward with its bright lights, constant noise, high social demands and substantial emotional labour, if I established routines and rituals. Two huge pluses were that the ward ran to a discernible daily routine, and that there were plenty of rules (these were variable according to staff but they were readable and a transgression could be decoded and added to my database).
My shifts were often 24 hours +. During each shift I travelled the same routes in and out of hospital carefully noting the landmarks until they formed part of my inner landscape. I ate the same food every day, which I bought from the limited outlets on the hospital site. Creating familiarity and limiting choices spared my cognitive load and lowered anxiety levels.
An early moment of crisis came with a sudden change of location for mum. Without warning, on the third day of her admission a porter arrived and she was moved from the clinical decision unit (CDU) to a main ward in another building entirely. In addition to the new map I would need to input, we had shifted from a diagnostic ward of four women (CDU), to an individual side room on CDU, and now on to a ward with fourteen beds.
This all meant progress in medical terms but it had an impact on my ability to cope. I began badly on this ward due to wrong-footing. Give me no preparation time, change my environment, make that environment densely peopled (with no privacy) and I will be ‘flustered’. Communication breakdown followed.
I’m glad it did. A delirious person in their 90s can’t advocate for themselves, and many physiological changes take place which can affect the ability to carry out basic bodily functions in an orderly fashion. Arriving on an elderly ward where staff don’t know your previous baseline functioning, and where these symptoms can be confused with dementia, can lead to conflict about how best to care for them.
Mum had been admitted with a urinary tract infection (UTI) and was finally on IV antibiotics. On our first night on this ward there was a moment at 4am, (having spent the night asking for bedpans a regular intervals, and trying to keep mum from falling out of bed) when I found myself on the sharp end of an auxiliary nurse’s tongue. I got a bollocking for want of a better word. Unbelievably (to me), I was told I was upsetting my mum and making her anxious, and that this was prompting her frequent urination.
It turned out that auxiliary night staff didn’t know she had a UTI (and significantly I didn’t know that they didn’t know!) I tried to explain that I didn’t know the rules of the ward yet, which seemed to be very different to the CDU, where it was okay to use the call button to ask for bedpans. As it happened, shifts differed. I quickly learned to update staff on mum’s current status, and to ask how we would handle toileting needs in the night with each incoming team. Communication and planning made all the difference.
This moment was signifiant. It could have been the moment of my unmasking. I seriously considered it, as I have sometimes done before in extremis. But I stood my ground – though I know that I looked horrified (I can tell when my face freezes and I openly stare at someone in disbelief). I have a very expressive face – which can get me into trouble! In the end I asked the nurse to leave me alone. This felt appropriately assertive.
We subsequently patched things up and became best mates. I liked and admired her immensely, she was incredibly kind but had misread me. In turn I discovered her acute stress about the very real possibility of having to work a night shift alone the following evening (eventually a second nurse was found). The turning point came when I uttered a foul expletive that this could even be a thing. We were on the same side – pro NHS and anti cuts to frontline services.
There followed a conversation with the ward sister, who asked me if I was unhappy with the care on the ward. Together we unpicked events, and I stressed how appreciative I was of her staff, but that there had been a problem of communication. I could have mentioned that I am autistic and need clear consistent communication. Again, I held back. Would this be useful when the misunderstanding was on both sides, and that staff had lacked crucial information? This was nothing to do with my autism.
I figured clarity would be important for any family member supporting their loved one in hospital, and nothing about the environment could be changed for me. Nurses were stretched beyond capacity, and my needs in this instance could be managed by me (my hyper focus and my myriad routines and rituals).
Significantly, I felt that staff would view me differently if I disclosed – and I needed to become part of the team somehow (and I did). If we were to get mum out in one piece, I had to mask-up. Due to systemic ableism I didn’t trust my unmasking wouldn’t create bias or prejudice against me and count against my ability to report accurately on my mother’s progress. As it happened, twice my pattern recognition skills proved vital to mum’s treatment. I don’t believe that I am wrong in thinking I would be taken less seriously, and where life and death were concerned I wasn’t prepared to do the research to find out.
I find that masking continues to be required beyond hospital, and in my care of my mum at home I’m navigating the boundaries of my masking even further.
I’m part of a growing team of carers as we get to experience a post hospital service which is on offer for six weeks in my mum’s local area. This has been fast-moving, as there is a window of time to claim it. All of this is so welcome but requires adjustment. The landscape changes, and it changes again.
The greatest change is in my time and my location. A split week is proving hard to adapt to, and this experience has felt what I imagine a small but significant house fire to be. I’ve lost a month and am slowly piecing together new routines and rituals. Forgive me if I owe you an email or a piece of work! I’m getting there.
In this piece I may have equated masking with ‘coping’, but I don’t quite mean it this way. I also seem to imply that if my autistic needs are met I can mask more easily, and that that’s a desirable state of affairs. I feel this may be true but am not advocating it for others. I’m just exploring what happened to me and I’m keen to ask questions of myself.
What I know I do have is a complex relationship with masking, which I want to be honest (and hopefully nuanced) about. Stigma exists, often we don’t have a choice (those of us who’ve learned masking as an adaptation). For myself as a bilingual person, I have come to think of masking as a bilingualism, wrought by the necessity of living between worlds with different cultural norms.
I hope to write more about masking and caring as my situation evolves. I find it shocking to think that in a public healthcare setting I didn’t feel safe to unmask my autism. I didn’t feel confident that staff would have received sufficient training to accept my competence once unmasked.
May 31, 2019 § 2 Comments
I’m out of office and in a new country, but I’m not on holiday.
This is because I’m helping care for my 93 year old mother who needs 24/7 at home, after a sudden acute infection and a two week hospital stay. My sister and I kept a constant vigil at her bedside and her recovery has exceeded expectations.
Caring has taken over for now. Everything’s been on hold, but I’m inching my way back to elements of my previous existence. Life took a turn, something happened (as they say) and I don’t quite feel the same about anything.
Hospital life is a parallel universe – you both live on the edge of your nerves and wade through treacle. There’s an airless tension to waiting for (and advocating for) wellness within a vast institution, and to observing extreme ill health at extremely close quarters. It makes you think (a cliche of course).
BBC Radio 4 Desert Island Discs kept me going through the quieter night shifts, and also settled me on my nights off. I could just about post to Twitter and Instagram on occasion, but all I could really think about was getting mum through it. Hyper-focus enabled me to keep going despite exhaustion, anxiety, and sensory stress. Autism was helpful in this situation (despite extreme challenge).
My art practice focuses on objects, and now that we’re out of hospital I can find moments in the day to touch base with it a little. I’m indulging a growing obsession with an intriguing thimble I bought online just before everything kicked off. My husband brought it for me one visiting day, tucked among my spare clothes in a small suitcase. Emerging jewell-like from it’s cardboard tube, it seemed impossibly exotic and evocative – speaking to me of my other life – amidst the wreckage of the elderly ward.
So I’m now on the trail of this thimble, and have found that it is one of a set of six. Why they have been inscribed with Spain 1937 is of great interest to me. I need to find out what occasion they were made for.
By great luck I’ve managed to find a seller who has the remaining five thimbles (of course I snapped them up), and one set that was sold only three days ago. My only clue is Marin Spain in the listing that was sold (for which there was a box).
The two current leads pursued are a suggestion that the thimbles could have been made as souvenirs for the famous Paris Expo of 1937 (for which Picasso created his seminal work Guernica), or that they could relate to Marin Chiclana dolls (as each thimble seems to feature a flamenco dancer). But, if they are Marin Chiclana related, why the inscription Spain 1937?
Is it possible that Marin Chiclana dolls were featured on these thimbles for the 1937 Paris Expo?
Another possibility suggested to me is the occasion of the antifascist Second International Writers Congress in Defence of Culture (1937), with the Paris Expo being more likely.
Whatever the case may be (including possibilities not yet touched on) the date, 1937, and country, Spain, make these thimbles significant and probably politicised objects.
A curious symmetry of circumstance means that I have to wait a little longer for my thimbles to arrive, the seller has been suddenly called away from home to care for their mother…
May 23, 2019 § 1 Comment
I’m writing in snatches. This blog post is a report from the field. It’s 2019 and my 92 year old mum is currently an in-patient at a major National Health Service (NHS) hospital in the UK.
My sibling and I are taking it in turns (with some overlap) to stay with our mother 24/7. She’s way too precious (and currently too fragile) to bounce around in a system that is stretched almost to breaking point – and I must add here that it has been stretched quite purposely so. It’s impossible to write this post without reference to the Conservative Party’s political strategy to destroy the NHS, our precious universal cradle to grave promise to all.
Democratic, life giving and life saving, the NHS has never been perfect but as long as I’ve been alive it has always been there – and it has been free at point of care. It seems the NHS is currently starved and living off reserves.
I’ve learned a huge amount in the space of a ten days. I now know that a simple urine infection can topple a nonagenarian, and that delirium can rapidly set in and thenceforth remain a major risk. Mum has been brought back from a serious brink but has yet to recover. Recovery will take quite some time and take a great deal of care to sustain it. We’re in new waters.
It’s been tricky to process. Especially so when caring has become a full time job. Finding time to manage all the accompanying emotions is difficult, and I’ve been coping by keeping on top of all things practical and adding some extra elasticity to the overstretched ward. I focus on never failing to thank staff for each act of care (and I am sincere in this devotion). I’m good at thinking about how stressful this job is for staff – and this takes away from focusing on how stressful it is for me.
I’ve gradually absorbed and mediated the shock of being suddenly wrenched from my life in Oxford into this new all encompassing life of wraparound care. I observe myself developing myriad new routines. I have no choice, and I wouldn’t have it any other way, though I can see that we are a rarity my sibling and I. We are very lucky that we can take the time to do this 24/7, and that we are of one mind that this is what we should do. Without us there would be no one to make sure mum is properly hydrated and that she eats the meals set in front of her. We couldn’t be sure that she would stay safely in bed and is at risk of falling. There are simply not enough eyes and hands to keep the level of micro vigilance required to keep her optimally well or to stop her from sliding into further infirmity. This is no reflection on staff – my report is on the system.
There are extreme shortages of staff on some shifts, and today low morale was in evidence among all ranks of ward staff. Despite how scary this is I become more empathic and stretch myself further. I can do bedpans and hospital corners. I’ve learned to roll my mother safely and administer her meds.
I’m friends with many of the women on her ward.
I’m writing in snatches. What is written above is now yesterday. I have slept for a solid 10 hours in a bed. Tonight my bed will be two chairs next to my mother’s bed. One medicine from the cocktail has been removed to improve her delirium, but its primary action was to stop nighttime trips to the loo. I don’t expect to sleep more than an hour or two.
Yesterday as I clocked off at lunchtime I headed for Costa and found myself weeping unexpectedly in the queue. The hospital Costa is different – here they have seen it all. My transaction for a lactose free flat white and a muffin went smoothly despite my near inability to talk.
Emotions do have a way of catching up with us.
I ask where is the love in my title for this blog. I reply that it is everywhere on my mother’s ward, but that love and dedication cannot be sustained endlessly without proper resources.
So I ask again, where is the love, the love and political will to save our NHS?
April 20, 2019 § Leave a comment
Journalist Christy Romer has written an article for Arts Professional entitled, Arts Council England urged to replace Grantium.
Romer states, “Arts Council England (ACE) has admitted that it’s “intuitive” funding portal Grantium, intended to “bring [ACE] into the 21st Century”, is seen within the sector as a failure.”
This admission follows a public consultation into ACE’s forthcoming 10-year strategy.
For those of us – including those with hidden disabilities – who have battled quite vociferously with Grantium over the years it’s a case of, no shit Sherlock!
I have no compunction in saying that it is a truly dreadful, ableist, contraption, which could have been purpose built to frustrate and tangle the mind. Access help is available – but this has always been an add-on accommodation which many have not known about, and which in any case is not suitable for all.
I won’t go into the details of the newly published ACE report here, but rather I will focus on Grantium and the application system from a personal perspective.
When I myself answered the consultation document it was with dismay at yet another online form which didn’t fit, and which seemed instead to cover many irrelevancies to my professional life as an artist and latterly as an arts organiser.
The language ACE uses is rightly criticised – it is often jargonistic and hard to read or make sense of. It also speaks to artist applicants and arts organisations as though they were one and the same thing. This is a major issue, as it places individual artists under great and indue pressure at the point of both application for and delivery of an ACE funded project.
I feel that the possible attempt to ameliorate this through the creative practitioner funding stream is compromised by the relative smallness of this particular pot.
In addition I have long wanted a conversation about the more deeply rooted inaccessibility of the funding model for many individual artists that goes beyond any physical portal (dreadful or otherwise). Grantium in a sense is the symptom rather than the malady. I feel there’s something deeper and more grave at the heart of ACE’s ongoing diversity ‘conundrum’.
I often think of the current criteria for funding applications as a series of demonstrable promises which must be made to weight the application in your favour. The need to impress, to be seen to cover all the necessary bases and more, is a worry at best, and disabling at worst, where disability/divergence are concerned. In which case, one of the present choices at hand is to offer up the ‘divergent self’ as the project. But this in itself (while being a successful and robust strategy when offered knowingly), is not entirely equitable. Indeed, you must still make your application promises, and articulate them in the requisite jargon, in addition to opening yourself up to the kind of sharing not necessarily required by other groups.
Loathe Grantium as I do, despite my learning to use it and to succeed in applications, I am almost more disquieted by the latest ACE pronouncement on ‘relevance’ as a driver for funding, as reported by Romer.
In some ways protected groups like my own (autistics) have been and will continue to be at the forefront of funding opportunities (mainly as subjects or recipients) – we are socially relevant as a group. We’re just so beautifully and unequivocally ‘divergent’! But how well our needs will be matched through these means is an ongoing question. Whether we will be even more likely to be opportunistically ‘targeted’, and/or our divergence harvested by others is an open question.
What concerns me and what I encounter in my working life, are the needs of neurodivergent creatives who are disadvantaged by a heavily coded system, where demonstrating outcomes which are value driven apply equally to organisations and individuals. This is not consonant with meaningfully supporting artists, especially those with ‘protected characteristics’.
Paradoxically, artists like me are ‘relevant’ by our very nature, but demonstrating the relevance of our projects may be beyond our ken because it will be further encoded by a neurotypically-led bureaucracy
April 11, 2019 § 2 Comments
What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.
Soon I will be asking the artists on the Arts Council England (ACE) funded Neither Use Nor Ornament (NUNO) project, how was it for you?
I have to do this as part of my evaluation process, but I’m also genuinely curious. This has been a unique project in which I have explored what it means to lead autistically (in my case).
I won’t have got things ‘right’ in all cases, but we made it to the finishing post of our exhibition opening in quite some style. I’m anxious to hear if and how my leadership has made a difference to the artist’s experiences of participation – and if this has further impacted their lives.
What I can tell you is what this project has done for me, by investing in my participation as a ‘player’ at a more senior level in my profession. In doing so I make the case for more of this for more of us. Autistic arts professionals are currently lacking such opportunity for progression – not only as artists but also as artist organisers. This needs to change.
It’s really very simple. In enabling me – through funding – to lead a significant project like NUNO, ACE have helped me to shift from a state of aversion to one of enthusiasm. Autistic aversion (in my case), I see now, was clearly fostered by a lifetime of exclusion. Not understanding neurotypical social code is perhaps where an autistic person begins in life, due to fundamental perceptual differences. What is less understood perhaps is the continued impact of this as a mechanism of our exclusion across a lifetime. Or indeed, what might happen in terms of ‘social appetite’ if the dynamic of exclusion were somehow ameliorated by genuine inclusion at any given point in time. It’s all so obvious once you’ve lived through it, but how many of us get this chance?
I feel we should be more aware that for some autistics social exclusion and a resulting aversion is a dynamic predicated on social bias, which once in play generates a serious barrier to our ability to decode social situations over a lifetime. Through such a dynamic myriad points of learning are lost, by which I mean two-way learning.
So what impact on the possibility of ‘social learning’ across neurologies can genuine inclusion make? I pose the question thinking that I know the answer. I think the impact can be highly significant because of the quality of my own experience in my shift from aversion to enthusiasm. Suddenly, elements of shared social spaces stack up. I am exposed to learning and foster learning in others. This is a two-way conversation.
I’m careful to mention the other side of the neurological coin in terms of learning (so-called neurotypicality). I’ve found that leading as an autistic person enables learning to flow in all directions. Neurotypical learning around me is probably the bit I can’t see, but which I reckon has made a whole heap of difference to how I am received and therefore to how I feel. I know that I am lucky in this regard – it can go so badly wrong when people can’t listen well. I’ve built up to this moment and have chosen my shared social spaces very carefully.
Being a ‘player’ has been vital to this process in which I now find myself wanting to engage with people and places in new and unexpected ways. I still crave a duvet day when life gets too busy, and I don’t love crowded events or small talk. I haven’t stopped being autistic – that not a thing, and I wouldn’t want it to be. What I’m talking about is appetite. The vital waters of my professional life no longer feel cold and uninviting. What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.
Social anxiety and social sensitivity are often seen as negatives, but what if they have fostered a deep sense of responsibility and generated a high level of care for the people on my project? I myself know that they most definitely have. What also, if by some mechanism unknown to me – other than sharing my neurological status and leading autistically – I have been treated more carefully in return? I feel this must be true.
What if seizing the opportunity to lead autistically and to design my project as accessibly as possible has led to something really fundamental? I look forward to gathering more evidence for this exciting notion in the weeks to come.
Currently, we lack models for what is needed to challenge the stranglehold neurotypicality has had on our culture. The dynamic it creates for autistic people is, in my view, toxic. So I very much hope that in time NUNO may provide one such needed template for others to riff with.