Category Archives: Autism

Look at me

I saw a few posts on social media this week about people who ignore their children in order to check their phones and messages…..you know the sort of thing, a picture of a fed up child and a parent staring at a screen. In my study (I am on the fourth floor and commonly known as the Mad Woman In The Attic, not without some justification) I watch parents taking their children to school and some parents even have earphones in – blocking out not only the wonderful sounds of the morning, birdsong and breezes, but also their children, who stump along next to them glumly, often trotting to keep up as the uncomprehending parent  marches ahead in order to get that task out of the way and get on to other important things such as staring at a screen and drinking coffee. It makes me feel sad…..

It also makes me angry that we are still at this point in our evolution. For the past thirty-plus years I have been attempting to inject humanity into health and social services on different levels, since the horror of student nursing (about a hundred and fifty years ago….)  when, on my first mental health ward for elders (the clue was in the shorthand title: PsychoGerries) I trotted along for my first day to discover a shabby-coated and smoking staff nurse standing – slouching – in the centre of a semi circle of commodes on each of which there was a naked elder. Both men and women were lined up together for ritual and casual humiliation. After a brief pause to get my breath as I stared at him I sent him home (well, there were a few well chosen and short words as well) and along with some chums set about restoring a little dignity. At every stage, for years, I have seen that same ritual and casual disrespect and humiliation handed out to all and any people using services by people who, if you met them elsewhere would probably seem like decent human beings. From elders having crap food shovelled into their mouths by smoking and grubby “carers” to people with learning disabilities ignored and belittled for being who they are, not even allowed to choose their own bedtime, their own food, the people with whom they will spend their days – their lives.

Don’t get me wrong: there are some brilliant support people, some fabulous organisations who strive to be good, to deliver humanity in their services and campaign for change. I know, and have worked with, many fab people who actually care and understand what that means (ie that it isn’t just about smiling a lot and nodding, but it is about taking risks, liking and respecting the people around you and understanding that each of us is individual – and encouraging that). But in the grand scheme of things these people are too few, and the others are tolerated because of where we are in our evolution. Which takes me back to where I started.

Being with people – supporting people, caring, whatever word you use, and the words matter because you will behave in a way that the words expect – IS the point. The things we do, taking children to school, supporting someone to eat, going to a gig with someone, supporting someone to put their clothes on, shopping with someone, they are all component parts, each as important as the other, as important in how we do them as well as that we do them at all. Those grubby “carers” shovelling food into someones mouth are indeed performing the task in their job description but their main task – of being with someone and having that relationship with someones humanity, their person-ness – has been lost. How much more time and effort would it cost to look at the person in front of them and see their person-ness and be kind? But that kindness is by and large not factored into how we commission, deliver, train for, reward and recruit to support services. Our task oriented focus takes us from task to task, KPI to KPI, box to box and target to target. When was the last time you saw the word “kind” in a job description……?

I remember – and I wish I could forget – watching a “carer” stand up, walk over to an elderly woman with dementia, and without a word roughly haul her up and out of her chair because it was “toileting time”. I sent a nurse home one night years ago because as we were nursing a comatose dying woman in her bed the other nurse leant over her – right over her – and said quite audibly to me “I don’t know why we are doing this she will be dead by the morning.” Casual cruelty, thoughtless indignity, the view of people as lumps of meat to whom we have to do things in order to earn a pay packet. Hauling ourselves and the people we support from task to task as quickly as possible…..for what? That task is a means to an end, a conduit through which we can nourish and nurture the relationship – it is the means, not the end.

It is that corporate and individual refusal to see people as human, as individuals, that allows learning disabled people to die in hospitals they should never have been in far away from the people who love them and allows the people who allow it to happen to bear no meaningful consequences.  It allows elders to be warehoused in buildings from which they will never leave until they die, who will never again feel the breeze on their faces, hear the birdsong or the sea, have someone look them in the face and hear what they are saying, be useful, be heard. Be a person. Have fun. If we are not having a little fun along the way what is the point?

Please take some time to look at the links here. Stay Up Late is a brilliant grassroots charity promoting the right for people with learning disabilities to have a choice about how they live their lives. That it is needed at all is telling.

The more difficult read is the piece about assessment and treatment centres. Read it and weep. And then sign up to the 7 days of action. Please

And please read about Connor Sparrowhawk and his phenomenal circle of support. Even after his avoidable death the people responsible have had little or no consequences, even after compounding the pain by denying wrongdoing, doing a bang up job of saving their own skins, and reducing the humanity of everyone involved. Shameful. Painful. And his Mother has responded with dignity and energy – I listened to her on the radio a few months ago while I was driving and I had to pull over and stop because I was weeping too much to continue driving.

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https://theatuscandal.wordpress.com/2016/04/20/natural-causes/

https://www.opendemocracy.net/uk/shinealight/clare-sambrook/on-connor-sparrowhawk-s-avoidable-death

The “care” industry is regulated more now than it has ever been – there are audits, documents, inspections, investigations, inspectors, investigators, commissions, boxes to tick, all manner of things supposed to keep us safe. And yet the abuse is still there, as open and filthy as ever. Safety is not guaranteed – and anyway, is safety the most important thing in life? Isn’t fun –  and autonomy, and independence, and risk, and loving and laughing, making mistakes, and pain and heartbreak  – as important? Aren’t those things the things that make us human? Those safeguards will never take the place of kindness and humanity, of seeing the person in front of us and respecting them just for being themselves. Let’s try that – and owning it when we get it wrong – for a while and see what happens………

 

 

 

 

 

 

 

 

 

 

 

 

 

A little pain goes a long way…..

Gosh how we undervalue our physical selves! All High and Mighty about values and philosophies and high-falutin’ principles we ignore the uncomfortable truth that without physical comfort we can sink.

After a week of volcanic uncontrollable pain which I knew was temporary but that didn’t help, the pain is coming under control and the say-it-quick-and-it-won’t-matter cause, a massive infection, is starting to abate. Good grief I even got dressed for part of today! The worst is over and I am re-entering the world of humans again even though I still can’t talk without sounding like Sylvester Stallone chewing socks. I want to stay awake all night and read poetry! Write poetry! Get that sunrise that has been in the back of my head right to the front and then onto canvas. Read A Brief History Of Time again until I actually get it. Having spent a week unable to do anything other than lie down and let my mind rattle around I want to jump and dance – not that I could realistically anyway with two left feet and a dodgy knee but the urge never goes. Actually it’s more like three left feet when I get going – how on earth do cats and dogs and other cleverly quadruped creatures co-ordinate four limbs? I struggle to keep the two legs I have under control, on a good day.

I have dived deep into the many dreams that came courtesy of the analgesia and had the time to understand them – without that luxury I would have romped out of bed the morning after my dreams and failed to reflect enough to see that, for one example alone, on one night the unrecognisable woman in the dream was my Mother and lying there following the dream backwards I was able to start to understand a few things that had foxed me for years. With eyes closed and mind open I could travel around inside my head and find some of the obstacles there, and start to remove them. Thank you analgesia.

Moving from almost unbearable pain towards comfort it is possible to close my eyes and instead of the scary black holes that were there until today, see in their place now a multitude of constellations that give light and warmth as well as shade and comfort and I can watch and follow them behind my eyelids enjoying their shapes, colours and variety. They offer entertainment and reflection. During the worst times of the last week as a distraction I forced myself to stop and listen to the birdsong outside my window – a window through which I have, with great pleasure, watched the seasons changing for more than fifteen years and through which I have watched my children play and grow, and where my granddaughter now plays too. I was as warm and as comfortable as I could be given the pain and it was possible to start to look forward to the Spring listening to those birds, to picture the flowers and hedgerows and smell and taste the asparagus, spring greens, cucumber, strawberries, rhubarb as if they were already here. I was in my own bed, my own house, with my children making sure I was comfortable and my books and cushions around me and a shedload of pain relief making life ok.

I was able to look forward past the pain because I was physically secure. How much would I have coped with the pain had I been cold, wet, outside and without comfort? I have little enough to be grumpy about even with the temporary illness, but I still managed it from time to time. How dreary, how impossible to cope with each day had I been homeless or stateless, insecure and alone. I am one of many people fortunate to have the opportunity to work and create an immediate environment that is comfortable, happy, peaceful. I have provided for my family, alongside my husband, and we have done it pretty well. We can be satisfied that we have done a decent job and we reap some of those rewards in terms of love and affection, support and security, wellbeing and happiness. Damn, I am lucky! There are however many people denied that experience, denied the opportunity to raise their children in safety and warmth, sometimes even without adequate water, food, protection. As I look forward to Spring and those strawberries many others look forward to nothing at all, hoping simply to exist for another day, hoping to keep their children alive, if not safe. There are people living in hospitals who should never have been there and who have suffered infinitely as a result, the product of arrogant careless models of “care”. There are people bereaved because someone didn’t give enough of a damn.There are people who sleep on streets and benches because they struggle with a world of barriers and expectations. There are people in prisons because they have no meaningful means of breaking away from the ropes that hold them in place and fix them in the amber of chaos. There are elders locked inside “homes” who will never ever feel the breeze on their face again because there is no-one to help them outside because of “staff shortage” and because of people who don’t get that some things matter enough to make them happen even if they don’t show up on KPIs and audits.

Creative as I am I cannot even begin to understand how that feels. I can empathise and I can witness – and both of those things matter and support a greater understanding and tolerance. I can try to make a difference, and I do try. But those things, those terrible circumstances, will continue for too many people. That is almost as unbearable as the pain…….

As I recover and anticipate with pleasure and gratitude the rhubarb, spinach and strawberries I will keep in my head all the people who I know are not as happy or lucky as me. I will offer them my love and respect and will continue to try to make a difference in the tiny ways available to me and I will try to create more ways, and I know many many fabulous people who do the same and more, and it is a genuine honour to know them.  We will keep on trying, in gratitude and humility and this last week has helped me to focus on that. Otherwise what is the point?

 

The Power of One

I am outing myself as an Only Child. Not only an Only, but also dual nationality and on the easy end of the autistic spectrum with synaesthesia thrown in for good measure. Good grief, I am even professionally interested in myself.

 

There are tensions and delights to be had from all the above. I am Irish/English, and until I started school at a convent where I lived in London I had thought I lived in Wexford with trips to Dublin. I only ever met Irish people and they only ever talked about Irish things. My streets were Irish streets filled with Irish people and Irish papers. We visited Ireland many times and it was where Family was and where Family happened. Good stuff was there. So………slowly realising we lived in London and I was a little bit English was a bit of a moment. And the accent! Well, that was finally knocked out of me once I hit Grammar School in the Shires. As a bright pupil I was lucky enough to have earned a proper education for which I am grateful, but no room for diversity back then! Conform or suffer, the stuff of Grammar and Boarding Schools throughout the  Counties back in the day, and I am not sure it has changed much.  I chose not to suffer. Well, not too much……….

That flaccid grip on national identity has an upside. As an Only I am not a natural joiner, I stand back and evaluate, I overthink, buying into something is not an easy gig for an Only and that apartness, the sense of being outside, brings strength as well as missed opportunities: strength to say no, to weigh up friendships ruthlessly, to maintain integrity and authenticity even at the expense of relationships or career choices – to maintain rightness. Juggling the Irish English that is deep inside is made easier by the lack of joinership – without that need to be within, to join, there is less of a sense of loss of identity as the roots are not firm but swim and sway back and forth under the connecting Sea. The downside is the crushing disappointment that can be had if what one has bought into is revealed to be corrupt or decayed. Childish disappointment in an adult can be corrosive. And that smug integrity can mean an intolerance for others who disappoint, personally and professionally. But, topically, this background makes it easier to understand current cultural issues: amidst the multitude of “communities” that take root around the UK many individuals claim to be ignorant of some of the dreadful things some people within those communities plan and commit. Nonsense. An entire community that can maintain its identity so precisely within another host community does so only by knowing what is happening within and either supporting it or allowing it and by controlling its members. I do not believe those protestations of innocence that are paraded on the tellybox when an atrocity happens. They are not credible. I was on the verge of radicalisation myself – although of course we didn’t know what that meant then –  as a young girl with family members in Sinn Fein when the IRA was casually sold to us as a romantic and necessary part of our culture. My apartness saved me then, and I am grateful for it.

I was “home” recently in Enniscorthy. Travelling alone allowed me to reflect as much as I needed to: I went to see family and friends, spent time simply watching and hearing the Slaney and listening to the birds and the horses, soaked up the familiarity of the places and enjoyed the simaltaneous detachment that is in the DNA of an Only. I watched and listened – something Onlys do a lot. My synaesthesia means that listening is an often joyful and often inadvertent experience, as well as sometimes complex and distracting. The sound of the horses hooves on the turf became a very visual experience for me, the birdsong I enjoy every morning provides a colourful backdrop to activity. I can be surprised by a visual experience from an unexpected sound or some music that I had not expected to hear – delightful, if a little unnerving at times! And Ireland has the best beach on the planet in Curracloe, and I spent time there too. My children all had their first experience of sand there as babies, deliberately.  Saving Private Ryan was filmed there. The fine pale sandy beach is in surroundsound and stretches away right and left fringed by the magnificent dunes and rushes, and the ocean, with its mauves and greens and blues rolls away to the horizon where everything surely falls off and magically glides back home………It fills the vision and the senses and recalibrates everything within a few short breaths.

I also spent some time at my parents grave. No comfort there, I thought, just pain and grief. I was on the verge of an internal meltdown as I sat on the edge of the grave and ran my fingers through the pebbles and stones covering what remains of my parents. And then, a tiny dog appeared from nowhere. Genuinely, I was sitting in the centre of the graveyard and the dog had not been visible, and then he was, and he made a fuss of me and insisted on sitting on my lap and I had no option but to fuss him and talk to him. And slowly the world righted itself again and things came back into focus. Job done, he ambled off, only to return magically just as I was about to leave, insisting on a final fuss and chat. Small wonders make ones day. And as a wise friend said, The universe can be a calm and comforting place , the gentleness of its messengers can heal and support in the most unexpected ways.

So, in a circular way, we are back at Integrity and Rightness. A part of grief grows directly out of regrets: regrets for things done and not done, for mistakes that can never, now, be put right, conversations that can never, now, be had, and love that can no longer be shared or spoken.  However we treasure our integrity – my integrity – it will always fail somehow. And that is because we are all flawed and broken to some extent and we will forget to do things, or will choose activity that we later regret. And sitting there next to the place my parents now share as they shared so many years together before that, I started to understand it better. In the end we are all alone with our grief and our regrets as well as with our triumphs and achievements.

I feel grateful that things conspired to make me aware very early on of the Power of One. It made me a better leader and a worse follower, oddly both non-judgemental but also intolerant of hypocrisy, created in me an over-thinker but thoughtfully balanced that with a resilience and drive that has led me along a fabulously interesting and rewarding pathway. Not an easy companion but I hope a rewarding one for those who choose to be close to me, and I cherish those who choose to be so. Celebrating your own Power of One and connecting with that solitude that nourishes, you will discover the strength within. Trust me, I am an Only!

 

 

 

 

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