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

September 3, 2019 § 2 Comments

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.

Masking and caring – an #actuallyautistic perspective.

June 16, 2019 § 1 Comment

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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.

 

 

 

 

Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

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Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.

I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.

I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.

I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.

Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.

Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.

There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?

Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.

It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.

Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.

I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.

We seem to use it to bash each other over the head, and I’m just not up for that.

I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.

This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.

In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.

I am both pulled about by my own privilege, and afraid of repressive impulses in humans.

If you follow my art practice you’ll know that I have good reason to be.

http://www.soniaboue.co.uk

 

 

 

 

 

 

 

 

 

 

 

The Art of Now: A Return to Catalonia #Radio4

February 5, 2018 § 9 Comments

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(I’m taking a camera which can’t take pictures to document the erasure of this history). 

The Art of Now: A Return to Catalonia

BBC Radio 4
Transmission Date Monday, 19th March 2018, 4pm
Presented by Sonia Boué
Produced by Anna Scott-Brown

So I’m finally returning. I can’t help wondering what Abuela (grandma) would say?

I wish too that my father could know that I am going back to Catalonia, via the beaches of Barcarès and Argèles (where he was held in refugee interment camps), to retrace his exile journey to England in 1939.

At the age of 18, he, along with 500,000 other Spaniards, fled for his life across the border to France. I have spent the last five years building a body of work in response to this family history, and have also cast my net wider to encompass figures such as British artist and Spanish Civil War volunteer, Felicia Browne, and the exiled Spanish writer and broadcaster, Arturo Barea.

Now, I have been asked to make a programme for Radio 4 with Overtone Productions, and my question about taking my practice to Spain will in part be answered. I will be retracing my father’s footsteps and creating responses along the way. We have a very short timeframe to make this programme and so I’m thrown into sifting and planning (in ways I am very conscious the exiles couldn’t) the artistic side of my journey.

The job feels vast, and at times overwhelming in the time available – not helped by a brain which  likes to canter off in 10 directions at once. Reigning in and staying focused is the thing. Here is where my obsessive nature is hugely beneficial to my work. I dig in and apply myself to the detail.

My feel for the bigger picture is pure intuition – I trust I can make the stages of my journey join up by getting each stage right conceptually speaking. My work is made easier because I can draw on some existing pieces in my growing collection, but I will be making new responses and hoping to bring them all together by the end of the programme.

I’m brimming with gratitude to Overtone Productions for pitching this programme, and feel a weight of responsibility – this is a highly sensitive history. Also Lurking is the spectre of inherited trauma – as I probe more deeply into it I gain a firmer grasp on the terror through which this history was suppressed. I hear new information from my mother which confirms it and brings it closer.

I feel my father’s fear as though it were my own. As though it were live.

I conclude that it is. This is what we mean by the term, postmemory. Recent events in Catalonia serve to demonstrate how difficult Spanish history is, how tensions remain from the unresolved legacies of the Civil War.

I won’t really know how to respond until I get to the beach of Barcarès, or until I’m confronted with the entrance to my grandmother’s flat (which she left in 1975) in the Barceloneta. All I can do is plan and pack my suitcases full of artistic possibility.

Each morning I pinch myself anew. Somehow I’ve landed the job of my dreams.

 

Adventures in Object Art #MfOR

October 13, 2017 § Leave a comment

This is quite a specialised blog post. I’ve been excited to find a slide show presentation from 2014 on a memory stick (autistically I burrow backwards and rely often on chance encounters with the past – the trick is to leave a trail…)

Like Hansel and Gretel before me I left some breadcrumbs, but still I’m rather awestruck that I could have missed working my way back to this somewhat seminal moment in the evolution of a project called The Museum for Object Research.

It’s a singular slide show. Many of the references will be obscure. It relates to my father’s two earliest plays – one unpublished and the other published in the Castilian language in small number and now out of print.  Many of the references would be known only to the conference delegates of 2014 (familiar with the history of Spanish exile). Other references perhaps only I, or a handful of other people would understand. This doesn’t really matter. It’s the conceptual framework for my object work that matters – this is the exciting nature of my find!

 

 

 

 

 

Red lines and the echoes of history; police brutality and the Catalan question.

October 2, 2017 § 7 Comments

I am not Catalan but I feel the recent events in Spain very deeply. I am an Anglo-British daughter of a Spanish Republican exile born in Madrid. My grandfather was from Galicia and my grandmother from Southern Spain, but they returned from their exile in France in 1941 to live in Barcelona. This place was my home from home as I grew up. Barcelona was my long Summers’ idyl, the city of all my high days and holidays, and my absolute love.

I have written often in my art blog about the long erasure of the Spanish exiles from the history books of Spain, and how my father and my grandparents never spoke of their internment in the French camps of Argelès sur Mer and Barcarès. I didn’t know or question why I lived in two places, or why my grandmother wept so bitterly in her kitchen each time we returned to England.

This is what violent political repression does – it silences you. Not just in the streets with batons. No. The erasure of memory and the taping of tongues creeps deeply into the everyday fabric of our lives. In many ways the invisible brutality of a dictatorship is at the heart of my recent cycle of paintings called simply, Buenos Días Dictador.

The dictator is everywhere and nowhere. The dictator follows you wherever you go.

The Catalan question itself is too complex for me to write about. I am an artist, not a historian or political analyst. But I know about living with exile. I know about suppression. And I know what’s more that these wounds run so deep in Spain that even 81 years on from the start of that Civil War it is hard to talk about Spain. Mine is a postmemory experience. My contact with the history is indirect, but my fear is present and real.

I have changed my social media settings to share this blog post.

The Catalan question can be hard to grasp, but you can recognise state suppression when you see it. All the hallmarks are there – and it’s impossible to argue with the statement by Barcelona’s mayor Ada Colau. A line has been crossed and Rajoy is not fit to serve. Like so many bullies before him he is a coward, one who has set armed police against an unarmed citizenry.

There have been many opportunities to negotiate, which is what democracies are made for.  Democracy is talking. Democracy can never be throwing citizens around like rag dolls, breaking their fingers, kicking and batting them with truncheons. Someone has died I believe, and more than 800 injured.

Most sickeningly there have been statements by Rajoy and his deputy claiming a proportionate  response. But, no. This is not ‘normal’ or right.

With my art practice I witness. It’s all I can do.

 

 

When only autism will do.

March 10, 2017 § 26 Comments

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Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

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