You have even seen my autism as it is.

The painting you see before you is literally buzzing. It’s a good representation of my brain right now.

I painted it with great emotion, inspired by a piece of classic Spanish cinema called The Spirit of the Beehive (1972). Bees swarming. Having a bee in your bonnet. It’s all connected. But what do you do when the bees are inside your brain?

Such is the sensation sometimes with autism (I find). I qualify this because it will feel differently to others. We don’t need a bunch of bee-brain theories (or pea-brain theories, to be honest).

That’s why it’s hard to write about the less comfortable aspects of autism – you don’t want to fuel the ‘bad autism’ beast. See! Naughty autism got you, they might say, but I won’t let them. It’s not the autism that’s naughty. I guess I should blame the sillies who tried to tell me I was slow (for example) when it’s quite obvious I am fast (too fast at times). But I won’t do that either.

Increasingly, I’m inclined to believe that these people and many others just don’t know about brains, probably because they’ve never had to think about them (or their brains in relation to others).

Thinking about our brains (and what’s ‘wrong’ with them) is probably the sole preserve of the ‘misfit’. Majority brains don’t have to bother. In my view this labour is advantageous and our ‘misfit’ brains hold many advantages too.

It helps to identify the volume of traffic caused by the bees (ideas), and they don’t always swarm so. They also connect parts that other brain can’t reach.

What interests me about the mark-making activity documented in the painting above is that it narrates the impulses of my mind via the movement of my arm (and hand). The movement of my whole body indeed (because it was suitably frenetic – you won’t know this but I just typed frantic in error.)

I have therefore (in a way I can relate to) shown you the inside of my mind, without recourse to any words. You will see it. You will see my joy and my rage. You will also see my freedom. You have even seen my autism as it is. Dynamic, rhythmic, capable of control (for I have stayed within the picture frame and given you a harmonious dancing surface to gaze at.)

I want to show you more.

A little bowl of love and kindness – taking the strain out of caring.

This has been an exhausting week. I’m used to caring for my mother part time in her own home where she has all the adaptations she needs. Suddenly the need for me to be on my own home turf coincided with mum saying she was ready to come and visit us in what has been (up until more recent times) her home from home. In a flurry of activity I cleared the clutter, refreshed her linen, and steamed the floors.

It’s been a luxury to spend 7 straight days in one place to be honest, but we’ve struggled at night due to a lower bed frame and lack of accustomed grab rail to help mum get out of bed. There had been no time to get one and no way to improvise a safe alternative. She has nocturia which means myriad trips to the loo at night, which combined with the loss of her mobility aid made for a whole heap of broken sleep for me. You can imagine what helping someone up 6-7 times does to a body, and I could see exactly why she snoozes so much during the day. I now have wrinkles on the bags under my eyes!

I admit I’ve felt mangled, and quite unable to piece together more than a Tweet or two. Oh, it’s been glorious too. Just seeing mum’s face as she took in a loved environment she thought she might not see again was marvellous. I swelled with pride as my little home proved more adaptable than I could ever have hoped. Mum could manage everything but the bed.

I’ve done the obvious and ordered a grab rail which will hopefully arrive before her next stay. These things can never come quickly enough though – where are all the local grab rail outlets when you need them? That said, it is amazing what the body and brain can sometimes do in straightened circumstances. We spent a morning troubleshooting the problem after a particularly ropey night. She worked out – quite spontaneously – that she could grab the bed frame itself and lean on her elbow (practice helped) to swivel round on her side and get her legs over the edge to terra firma. It was a case of now I can and now I can’t for a night or two. This became easier and more fluid an action as the nights wore on. We kind of managed, but her risk of falling is great and one must keep an eye open (from the futon mattress at the end of the bed).

Today I was to drive her home (to her house) after lunch, and feeling slightly less mangled than before I was inspired to make croutons to go with our homemade courgette and black bean soup. It would use up a block of stale bread which had got trapped in the bread bin under a pile of newer slices. The act of not wasting felt good in itself. A cheery drizzle of olive oil was soon guzzled up by the pale hunks, and so I drizzled some more, and then some some more! Croutons know how to take care of themselves allowing me to wander back and forth between various points of interest in the room.

Mum – newspaper on lap – slept peacefully in a chair while my now young people bantered. Granny (mum) helped bring them up when they were tiny, and was a faithful weekly visitor despite the 70 mile commute. One picked out a tune on the piano, the other worked on a drawing. Both hovered over the pan. Smells like sausages!

I chucked some thyme at the croutons, no longer pale and wan they looked crispy and golden. This simple transformation lifted a hearty yet simple soup to new and quite heavenly heights. Delicious! called out three generations. Mum doesn’t eat a lot these days, but she had polished off every single crumb. This felt like old times again when she was at the heart of our little family as the commuting grandma. It was wonderful to have her there again as we really didn’t know if she could manage the environment.

Extreme old age isn’t easy, not one bit. Mum carries it with great dignity but these few days without a bed rail have taught me so much humility. We will all at some point need adaptations (if we’re lucky) and should probably plan ahead. I’m chastened by the unravelling that can take place for want of one simple adaptation.

I can’t really explain it but somehow that lovely bowl of soup set us on our way and mum’s visit feels like a triumph. For want of a bed rail the battle for sleep was lost, you might say, but a bowlful of love and crispy croutons won the day. Next time I’m awake in the wee hours I will try to remember this well.

Convoy – una respuesta artística al convoy de los 927.

Sonia Boué explica su nuevo proyecto: crear un memorial para El convoy de los 927 en el año 2020

Hola, soy Sonia Boué, hija de un exiliado español (llamado José María García Lora), viviendo en gran bretaña. Soy arista visual, y desde 2013 mi trabajo ha tratado con el tema del exilio español y la respuesta cultural a la guerra civil española en gran bretaña. Este trabajo se encuentra en mi pagina web

Ahora tengo un nuevo proyecto. Se trata de un fragmento de testimonio oral narrado por mi madre. Ella cuenta que una noche en 1940 mis abuelos y bis-abuela escondieron en un bosque para escapar los Nazis. Resulta que la anécdota de mi madre refiere a El convoy de los 927 que partió de la estación de mercancías de Angoulême, 20-8-1940. Exiliados y separados de mi padre, quien había salido de España a pie durante la Retirada con el ejercito republicano, ellos en cambio eran funcionarios y habían sido evacuados por tren de Barcelona al destino de Port Bou. Pasaron por los infames campos de Francia y finalmente habían sido permitidos vivir cerca de Angoulême y trabajar allí en una fabrica de armas.

El convoy de los 927 fue el primer ejemplo de la transportación de familias enteras con destino a un campo de exterminio Nazi, y el número 927 se refiere al número de exilados españoles, incluyendo mujeres y niños, llevados ese día en vagones de mercancía (transporte para animales mas bien) al campo de Mauthausen. Llegados a Mauthausen, los Nazi separaron a las familias, internando as los hombres y chicos mayores de 13 anos, y mandando a las mujeres y niños menores a la España de Franco. El documental El Convoy de los 927 contiene testimonio de los sobrevivientes que nos puede ayudar a comprender las condiciones, aunque el acto mismo es casi impossible de entender.

Somos hermanos

Cuando hice mi programa de radio con la BBC The Art of Now – Return to Catalonia (en 2018) me encontre con un grupo de valencianos en Argelès sur Mer que también eran hijos de españoles republicanos. Me regalaron naranjas y cuando nos despedimos uno de ellos me dijo, somos hermanos (se oye en el programa a los 16.15 mins). Me pareció de lo mas hermoso y esto es el espíritu solidario del proyecto Convoy.

Mi concepto artístico se basa en un patrón creado repitiendo cuadros usando una fotografía de 1939 de mis abuelos y bis-abuela tomada en su exilio (lo cual fue mandado a mi padre en su exilio en Londres). El cuadro consiste de dos imagines rectangulares. Utilizando técnicas digitales he añadido al retrato original una imagen reflejada (en rojo) significando un possible destino alternativo. Con el arte puedo imaginar el inimaginable – que el convoy podría haber sido de los 930.

Mis obras suelen contener un fuerte elemento de homenaje, y con Convoy mi visión es crear un acto de solidaridad con los 927 exiliados llevados en ese día de terror. El sentimiento que trabajo aquí es de una familia amplia y acogedora de españoles republicanos y exilados, que guardaremos en nuestra mente colectiva tras las generaciones. No paro de pensar en el momento cuando salieron del bosque, mis abuelos y bis-abuela, y encontraron a Angoulême vaciado de gente. Al llegar a España por fin en 1941 mi abuela estaba tan traumatizada que no podia hablar. Mi abuelo preocupado por ella la mando a su pueblo en Galicia para recuperar peso y ánimos. Nunca hablaron a mi generación de este tema ni de la guerra civil en si.

Con la repetición de una imagen generas algo nuevo y quizás con cada repetición se vuelve mas potente. La idea de usar el retrato para significar cada español en ese convoy se formo durante mis investigaciones – y de allí entro la matemática. También se puede jugar con orientación y color entre las múltiples posibilidades artísticos.

En la siguiente imagen (abajo) se voltea el destino de mi familia. De allí entro la idea de usar 930 caras en Convoy, así mostrando la solidaridad de los 3 exilados escapados. Imagino que no fueron los únicos escondidos ese día – quien les aviso, y quienes pudieron avisar (en su turno), son detalles que nos faltan. Quizá siempre serán misteriosos.

Pero el arte nos acerca a otras verdades, y nos ayuda a mediar historias traumáticas. Buscando la manera de representar múltiples personas con las caras de mi familia en forma cuadrada he creado un patrón totalmente accidental. A veces me parece mas potente lo inesperado. Lo que llama atención es el momento en que el ojo pierde la caras y empieza a ver solo el patrón. Para mi la illusion óptica llega a ser símbolico de la posibilidad de perder la humanidad. Quizás nos puede decir algo sobre la tendencia en ciertos circunstancias a la inhumanidad cuando de trata de grupos de personas numerosas.

La decision de usar el color rojo significar sangre y la política de usar el termino rojos para abusar y exterminar a los exilados españoles.

Investigando mas profundamente el lado matemático de mi concepto resulto en un plan de crear 155 cuadros midiendo 10 x 10 centímetros con la forma de 5 lineas de 31 cuadros para representar los 930 personas en esta narración. La obra final medirá 50 centímetros por 3.1 metros – una forma poco usual y así mas llamativo. Me encanta esta idea de una obra larga y delgada que implica un camino de parte del visitante, y que dependiendo del punto de vista uno encontrara caras o patrón.

Ahora me falta encontrar el lugar debido para mi homenaje que quiero exponer en 2020, lo cual sera el aniversario de 80 años. Espero poder escribir noticias del desarrollo de este proyecto pronto. ¡Hasta entonces!

Convoy – responding to the Convoy of 927.

Sonia Boué explains her new project: to create a tribute in 2020 for the Convoy of 927

I have been lucky enough to be invited to join Paper Trail project:

“100 pieces of heritage paper spanning over 100 years, given to 100 artists to create a piece of work.

Each piece of paper represents a year. We have invited the artists to create a work in response to something that happened during that year.

The paper must be used in the creation of the work. It can be printed, painted, written word, pulped, re-created, sculpted, folded, cut, collaged etc”

As the founding artists of appletye, Dawn Cole and Dan Thompson, know my practice well they have chosen the perfect Paper Trail year for me. I’ve been given paper 16 from 1940 made at Hayle Mill, weighing 150gsm (hot pressed). The sample sent to me is approximately 10 x 7 cms.

1940 is a year I’ve worked with recently, for the Uncomfortable Histories (UH) exhibition, and the Paper Trail work very much follows on from my piece for UH, entitled They Slept in a Forest

The subject of my family’s evasion of a Nazi roundup of Spanish republican exiles at Anguoulême on August 20th, 1940, to the Mauthausen camp, continues to be the focus as I build my Paper Trail response, and it’s suddenly gone from a tiny sketch (inkjet print on tracing paper which I’ve clipped to the 1940 paper sample) to an ambitious project, which I’d like to realise in 2020 as an act of remembrance. So I’m already looking for gallery space!

This new work is entitled ‘Convoy’, because the roundup has become known as El convoy de los 927 (927 being the number of Spanish exiles herded into cattle wagons that day). Almost overnight the tiny sketch evolved into a big idea with unexpected mathematical underpinnings. Through this exploration I’ve become enthralled by the idea that a number (repeated) becomes a pattern, and that this can in an immediate and powerfully visual way tell us something about the inability to ‘see’ dehumanisation in the face of number.

What you are looking at in my tiny sketch are three members of my family, my grandmother, grandfather and great-grandmother, more accurately a photograph of them. It was taken in 1939, and sent to my father (most probably to reassure him in his exile in England that they – in their exile in France – were okay). By August 1940 they had somehow ‘faced down’ a second genocidal threat (the first being their evacuation from Barcelona in February 1939). By 1941 they had made their way safely back to Spain. My father remained in England.

What I’ve done is to imagine their alternate fate with a red mirror portrait, which has created a square-shaped image. I’ve multiplied it repeatedly, et voila, together with the small size of my print (10 x 7 cms to match the Paper Trail sample), you can’t immediately see that the image is made up of faces. What you see is pattern.

How my family knew, and what they knew remains unknown. Who told them of the danger and who they then told (if anyone) is probably unknowable. A fragment of oral testimony mentions a friend, but this is vague and quite elusive information narrated almost 80 years on by my mother who is now 92. She goes on to say that they returned from their place of hiding (a forest) to find “the Germans had cleared the place.”

As the pattern builds the orientation turns to reveal the possibility of an alternate destiny in which historians would refer to El convoy de los 930.

As I tentatively made my way into this work I chose red to symbolise the bloodshed and for the association with communism. Spanish exiles were targeted as ‘Rojos’ whether they were communists or not.

I quickly realised that my use of the square in a square formation was problematic, also that in using 6 faces I could never aspire to creating a piece of work which would represent the 927 Spanish exiles. In any event I wanted to work with 930 to include the 3 who, as my son remarked, “got away.” I am sure they were not alone in this, but Convoy is about a very personal response, and perhaps even the expiation of survivor guilt. This feels to me like an act of both memory and solidarity.

In overshooting the mark to create 1536 faces, I began to dial back to work out how to make my 6 faces become 930, and what shape they could form.

In working this out I have arrived at my plan, to create 155 squares (10 x 10 cms). The formation will be 5 rows of 31 squares, measuring 50 cms by 3.1 meters. I now need to find a space which will take me and my tribute (probably rendered on photographic paper on whatever kind of support works best with the gallery space in question).

There may be other versions and/or further sketches but I feel my concept is whole. I have never experienced inspiration like this (based on pattern and number) and this is a whole new way of working for me, though my commitment to the history I’m working with feels the same and I’m determined to see this important tribute come to pass. There is something quite compelling about the form I have chosen.

There is much more to say about El convoy de los 927 and I will blog about it as I make my way.

Meanwhile if you know of a venue which would welcome this work in 2020 please do let me know!

Dolls Heads: visual process blog responding to historic violence, noticing pattern, feeling my way.

Congruence in the making – how to live autistically in a socially hostile world?

Version 2

A blog post on autistic masking, the benefits of self-knowledge, and achieving congruence. 

There are many things this blog post ‘should’ be, which it isn’t, and I’m aware of the unappealing nature of beginning with ‘failure’, but this is where I must start.

As autistics, god knows, we’re used to that! Those of us late discovered autistics (credit to Annette Foster for this wonderful alternative to the term diagnosis)  have decades of social ‘failure’ tucked (not so neatly) under our belts. Though as I write this I begin to feel that the word exclusion works just as well as failure, if not better.

Curiously, one way to be ‘included’ for autistics is to mask our autism and play an elaborate game of pretend.

Those of us who could have learned to mask, which is a survival mechanism, using observation and imitation to camouflage our difference. The effect of this in the short term is social survival (going under the radar of bullies, and avoiding humiliation and derision), but in the longer term we can experience serious identity confusion though masking. The pressure to mask can lead to a fragmentation of that all-important sense of self, which I believe all humans need to live happy and fulfilled lives. Many of us probably retain a powerful core identity (which at different times and in different contexts must be pushed underground to survive) and that’s possibly why we often have a rich imaginary lives, enabling us to ‘compensate’ for all the masking to some extent.

For non-autistics, the thing to remember is that often masking is not a conscious choice, it can therefore be hard to uncover it in ourselves. Before my discovery, I experienced it as a force beyond my ken or control, with a good dose of shame attached to it. Why couldn’t I get a grip and just be me?

Yet although it’s so often involuntary or indeed forced on us, it can be so deeply embedded in our personalities that approaching the question of the ‘authentic self’ (a flawed concept in itself) can’t be separated from an element of masking. All humans mask to an extent (the social carapace as my longtime therapist used to call it), but autistic masking is of a different order. I believe this is due to the extreme effort it can take to sustain it, as well as the consequences on our personal development and safety.  Some of us get trapped in relationships and situations which are abusive or toxic because we’re masking our true needs and identities, and don’t know how to stop. Potentially, there’s a huge amount of fear, anxiety and danger involved.

My own impression, before my discovery of autism, was of being surrounded by people who had a curious sense of purpose and admirably stable identities, while I blew with the wind – literally taking on the characteristics of those around me. In order to shed them off I craved significant time alone – I now see – to ‘get back to myself’. ‘Myself’ needed recovery time to allow these other personalities to ebb away. Somehow they seemed more alive than I, and a cacophony of voices, astonishingly accomplished phrases, and carefully coordinated gestures coursed through my veins like a wrong blood type transfusion. I was often enchanted by their glamour and tortured by endless false comparison. These days the wrong blood transfusion experience is a curious memory. I’ve strangled this malady at source. They do say knowledge is power, and I can mainly chose my activities (an acknowledged privilege) and adapt to my needs, so that recovery time doesn’t dominate my days.

Imitation is still the font of all my learning. If I spend time with you I will quickly pick up traces of your accent, mannerisms and inflections – it means I like you, but I experience this in a less invasive way these days. I know who I am, and I don’t have to inhabit your every way to know you, but I will joyfully observe (notice in detail!) and enjoy the you-ness of you. I’ve got to know the many forms of my masking, and I understand that you mask too (I sense it, and always did if I’m honest) – but there are moments when our beings touch with the lightest of butterfly kisses, and it’s real.

I want to say that I’ve learnt to mask more smoothly since my discovery – as though I’m now a more experienced driver, who doesn’t crunch the gears so often, though (of course) I can still find myself on a rough road at times.

These thoughts coalesced in my mind as I listened, in particular, to Will Mandy and Catriona Stewart present at #InsideOutAutism, in quick succession. The impact of masking on our mental health, and the benefits of finding ourselves in community and through making, impressed themselves on me in new ways. The importance of congruence in my own life journey came to mind.

It wasn’t until I was home again and took off my handmade brooch (pictured above) that I made the connection between the powerful congruence I felt at #InsideOutAutism and wearing it on both days. I’m still processing why this act of making and wearing felt significant. I’ve never been one to wear text on my body in any form, perhaps because my identity has been at times uncertain and under siege.

But my self-fashioned brooch was different.  Here was an artefact, crafted over time and without conscious purpose, redolent of my journey as an autistic woman in reclaiming the language used about me, and my people. So antiquated is the text that I am unfamiliar with some of the words, and it acts as a curio, or something I could have inherited. I feel I have. It holds a familial feeling, and when I peer at its loveliness I hear the ancestral whisper – we were once like you. If an object can be joyful and witty, it has those qualities. Have you ever bounced on a trampoline? My brooch is the rebound which tosses your heart in the air. It gives me abnormous joy. It trumpets confidence. That zing-a-ling feeling that I’m A-okay.

So I was delighted to learn through Catriona, that an artist called Lou McGill has been making the most gorgeous Freedom is fragile pendants and brooches

I’m moved to think there is something significant afoot in the making and wearing of these powerful almost talismanic objects, which I’d like to explore. Watch this space!

With special thanks to Susie Bass, Annette Foster, Dr. Kate Fox, Dr. Catriona Stewart, and Dr. Will Mandy for inspiring conversations, poetry, and presentations at the recent #InsideOutAutism conference organised by Prof. Nicola Shaughnessy and the Playing A/Part research team. 

Masking and caring – an #actuallyautistic perspective.


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.





Out of office reply, Ole!

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…



Where is the love? A report from an NHS hospital ward.

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?

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