The CaminoLB

A List

The rain, the pain, the joy, the laughter, the stories.
The sun, the mist, the hail, the dogs, the cows, the calves
the coats on, the coats off again.
The sweets, the nuts, the wine, the beer, the chips, the eggs
the coffee, the cake.
The doctors, the activists, the clowns, the mothers, the fathers, the sisters,
the grandmother.
The boots, the poles, the hats, the ankles, the blisters.
The tips, the trials, the teapots, the bayleafs, the bus.
The spirit, the fight, the screams, the tears, the prayers, the silence.
The monasteries, the cloisters, the dormitories.
The moss, the trees, the woods, the forests, the granite, the stones
the paths, the tracks, the roads, the mud.
The pride, the strength, the care, the love, the leaders, the loss,
the life, the earth, the living
And the dead.

Why You Can’t Rely On the News Media to Understand Disability

Here is a piece I wrote for UnHerd on the 15th of March

Twenty five years ago, I entered the twilight world of parents with children with special needs. My beautiful daughter was born with a rare genetic condition, CDKL5 that leaves her unable to communicate with words, see, walk or live independently. She needs 24-hour care to help support her complex epilepsy.  
 
I thought I was on my own before the advent of the internet and with no support network. I did not realise that I was among the hundreds of thousands of parents in the UK who have a child with special needs as almost all were out of sight and out of mind.  Shockingly, I was told by some well-meaning people it would be better to put her in a home and forget about her. 
 
Rarely did I read or learn about people like me and my family; we rarely featured in public dialogue.
 
This is changing but progress is slow. People with disabilities are appearing in adverts such as the latest McCains ad or in television programmes like Call the Midwife, but these are the exceptions rather than the rule. In news the narrative is closely focussed in three ways.
 
There are the extreme stories. The shock at the abuse at Winterbourne View; or the despair when a young man dies in a bath in an NHS Treatment and Assessment Unit, in Oxford; or the horror when a mother takes her life and that of her autistic child after she jumps off a suspension bridge. Once the initial furore is over, the fight for justice and change is often a battle left again to families.
 
Then there are the stories of heroics. This week the media celebrates the work of Stephen Hawking, that brilliant scientist, and focuses on how this was achieved despite his ‘desperate disability’, while almost every other person living in Britain with ‘desperate disability’ goes unnoticed.

And, lastly, there are the scroungers. The supposed parasites who live off the state, rip off the state and give nothing back seen fleetingly in headlines. 
 
Rarely, though, do I read stories I recognise. Stories concerning people like my family, and all those others I meet.
 
The everyday lives of ordinary people do not make great headlines, which is why the lives of people with special needs and their families go largely untold, unseen and unrecognised. And this is a problem.
 
It means the issue of a broken social service system is not addressed; the weight of paperwork and accountability required from families that far outweighs that which is demanded of corporates is not discussed; decreasing budgets for respite are not argued over; and the reality that for many people leaving school there is no future is not faced. 
 
At a recent meeting discussing “transition”, the intensely stressful period when young people move from children’s services into adult services, a third of the parents attending were in tears. They were learning there was no future for their child: no supported housing, no further education, no jobs and no support. Child services may be minimal, but adult services are almost non existent particularly for those with more moderate disabilities. 
 
Nowhere is this reported.
 
And so the fact that nearly a third of those in prison have a learning disability or difficulty goes unnoticed. So too does the fact that large employers, including local authorities and charities, fail to keep records of how many people with disabilities they employ, even as they ask others to make workforce accommodations. Who talks about the fact that the vital role played by the paediatrician suddenly halts at 18, and that no one oversees adult health? And what about how the money spent on bureaucracy is continually rising, while frontline services suffer?
 
There are seven million carers like me in Britain, an invisible taskforce taking so much strain off the state. Did you know that carer’s allowance is set at £62.70 for a minimum 35 hour week? And if a carer earns more than £116 a week, they lose that? Does anyone write about how carers are usually on call 24 hours a day? That their days leave them broken, exhausted and beaten till they themselves are in need of care. 
 
As a nation, we do not invite people with disabilities to our homes. We do not meet them in our workplaces. The tragedy is we do not really know them.
 
And because this reality is not recounted, the pockets of good practice – which if shared would raise hope and expectations for people with special needs – go unnoticed. So local arts groups working in a truly integrative way are uncommended. But I could tell you about Access All Areas, with projects like Spinning Wheel, in which people such as my daughter are seen as a vital part of the performance. Or there are the social evenings hosted by parents at Shoot Up Hill, north London, where families gather to share a meal around a table with their adult children. There are the cafes and the industries like Harry Specters , a wonderful chocolate company, set up by parents who otherwise could not see a future for their son or daughter. We do not see employment schemes such as ProjectSEARCH, through which young people with learning difficulties spend a year working in hospitals and hopefully graduate into employment. 

 
People with special needs and their families have been painted into a corner where they are invisible. They are treated with a casual indifference at the same time as the likelihood increases that we’re all going to need better care and support in the future. Only today I read a story that more than one quarter of all British adults are living with at least two long-term health conditions. What better way to find out how to make our currently malfunctioning system work than to examine what the world of disability already knows?
 
Mainstream media need to pick up on issues that families of children with special needs have been shouting about on social media for some time. For by ignoring these stories all our futures are damaged.
 
By embracing the world of disability and recognising the value of a perspective often untrammelled by normative behaviour we can find out things about ourselves that maybe we didn’t want to know. Perhaps we will realise that many of those things we strive for aren’t quite so important after all. It’s time our stories were heard.

Deep Care

Earlier this week I read an excellent blog post from Kara Chrome, The Chair of Anthropolyatrics where she discussed the need for the role of an adult paediatrician, a conversation that has been rumbling around the world of families like us for sometime.
They would do well to look at the model working for our lovely daughter.

It is no secret that when she came back from residential school she spent a year of her life dying. I slept on her floor and the walls closed in around us. We were rescued from this desperate place by palliative care at Great Ormond Street under the guise of consultant Fin. She came to our house, she saw our distress, she arranged a psychologist for me and night care for Iona. We found a solution to allow Iona to go back to education and slowly life became almost normal. I can still remember my overwhelming distress when our lovely daughter a few years later had to move into ‘adult services’. The team that had provided us with warmth, understanding and deep care would be gone and once more we would be floating around in an unsupported alien world.

But the transition was managed. Fin came with me and Iona on our first appointment to the proposed adult neurologist. When I left in tears having encountered someone once again who knew best and didn’t listen, she found me the kind of neurologist I could work with, someone who listened, who cared and who put quality of life way over quantity of seizures. That next step was replacing herself.

She broke a new pathway to the adult hospice service and took me to meet two different palliative care consultants. I chose the one who made me laugh the most. He resides at the Marie Curie hospice in Hampstead. I go with Iona every 3 months for a visit, we chat, we laugh, sometimes I almost cry as he checks in with both of us. We develop new understandings and I sometimes learn new procedures. We talk about fears, exhaustions, holidays, bloods, bowels, sleep, drugs, skin, life and he always asks if there is anything else they can do to help. As much as I have come to hate hospitals I have come to love hospices.

Yesterday I sent a last minute email about a holiday I will take. A scary time.

This is what I got back this morning, ‘I have popped Iona’s name into a bed slot for the period that you will be away and I will let the team know of the process so please rest assure we will be here as a backup – I hope all is calm during that time –  and enjoy your well-deserved break :)’
This was my reply, Thank you so much. Your help just makes it all possible

It seems to me that when a person with learning disabilities becomes an adult they need a consultant who listens, who cares, who has access to specialists when they are needed, who has time and who takes time to find out who you are and what will help. There is little room for this in big, monolithic hospitals, and GP’s who need the support of paediatricians in childhood are unlikely to manage an overnight change as the young person celebrates their eighteenth birthday. People with special needs are dying younger than they should, their health care is not as it should be. It is time to stop talking, start applying common sense, and truly value the lives of people who have so much to give.

Full disclosure

There is something so wrong with a system that allows a young man with learning difficulties die of complications arising from constipation. Richard Handley went for a poo on average less than once a week in the 42 weeks running up to his death. When he was finally admitted to hospital they operated and removed 10kg of faecal matter.
I remember a conversation with a friend when she registered her shock that ‘care providers’ record bowel movements in people’s notes. Well not so big disclosure, we also record them in our lovely daughters diary. We, parents of a daughter with profound learning difficulties and low muscle tone, know the dangers of bowel obstruction and know that it can lead to premature death. Not only do we note bowel movements, we also record their consistency, the food she eats, and her use of regular laxatives and enemas. Too much information I hear you cry, well more, we, her family and her carers don’t just rely on notes we also talk in sometimes graphic detail, about the consistency and size, sometimes using words like explosion or at the other end of the spectrum, pellet. Sometimes we apologise to our lovely daughter for talking of such things, but not as much, as we would have to, if we ignored the issue and talked only of the weather and the colour of her clothes.
I have laughed in the knowledge that comes from shared experience with my fellow mothers of young people with special needs as we have sat in restaurants and over a bowl of pasta discussed the bowel movements of our offspring. But I would not be laughing now were I in the courtroom listening to this sorry tale, nor would I be laughing if I was one of those charged with supporting Richard Handley and failing, but most of all I would not be laughing if I was his mother and had trusted those people to look after him and keep him safe.

Loneliness

Yesterday I went to the Learning Disability England conference in Birmingham where the station is extraordinary and the venue more ordinary.
In a vast room, full and crackling with anticipation, there was much laughter, honesty, heckling and a smattering of sadness too.
Donald took to the floor shortly after lunch. He described himself as a man with learning difficulties and then taught us a lesson. He found himself some years ago with no friends and eaten up with loneliness. His fridge was full of milk he didn’t drink and bread he wouldn’t eat. He bought them to make himself feel validated, to prove that he existed. It was the only time in the day someone spoke to him. Things got so bad that the police were called.
He turned things around with support at work where they might just put an arm around him and tell him it will be ok on a bad day. He has also found his tribe at his beloved MK Dons, it is not just the football he loves but the people around him. Unexpectedly, at the old folks home he found a new passion. He was persuaded to join in a pamper session and loved the experience so much he now wants to train as a nail technician. He flashes his shiny black nails. What a man. I can’t help feeling that not only has Donald’s life improved but so has the lives of all the people that know him.
At lunch I met a lovely young woman, long flowing hair, deep eyes, who spent 7 years at college learning administration and volunteers at hospital in Nottingham. She longs for a part-time job as she wants to earn her own money. She is told she is either too over qualified or too under qualified. I would hire her in a flash.
What are we doing when we cannot see the extra stuff that people with learning disabilities bring to the workplace? We miss out not just on their skills but also their humanity, their honesty and their challenge to us to see the world differently. What are we doing when we exclude them from our perfect social circles?
Check out this video from Casa Carlota a Barcelona based design studio and see what might happen if we open our eyes to the possibilities of a good new world.
If you are not in a position to offer someone a job, take a tip from Donald. Say hello to someone you don’t know today. You might be the only person they speak to all day.

Justice For Laughing Boy

Justice for Laughing Boy By Sara Ryan

I remember it well. I was only too happy to hear my email ping and find the next bulletin of the Laughing Boy blog arrive. I opened it somewhat surreptitiously, sitting as I was in a busy but boring workshop, and read on. I read that Laughing Boy had died.

I felt physically sick. I left the conference hall  and cried.

I still think of LB often.

In Justice for Laughing Boy Sara Ryan tells the shocking story of how her son Connor, Laughing Boy, died in an ATU in Oxfordshire. He was a handsome young man with the future ahead of him, ideally involving a, ‘haulage company and a beautiful brown eyed woman’. He had learning difficulties and epilepsy and as some young men do was experiencing a hard time with anxiety and sometimes unpredictable rage. He was admitted to Slade House in Oxfordshire, an NHS Treatment and Assessment Unit, where he was under the care of a team of psychologists and ‘experts’. This is where he died, a young man with epilepsy drowned unattended in a bath.

This book is written with all the warmth, charm and humour that drew me to Sara’s blog in the first place. Many anecdotes stick with you long after reading. Many are laugh out loud funny. But what is not funny is that Sara has spent the last 3 years searching for accountability, apologies and justice. This is a story that starts with the joy, the unpredictability and the simple weirdness of living with a dude like Connor and moves on to the massive unrelenting task of fighting for justice 3 years after his preventable death.

Sara and her incredible band of supporters have waged war on a system that is convoluted, obfuscating and weighted against families. With resilience and tenacity they have stood their ground, they have pushed and cajoled as they fight to bring some kind of meaning to this awful and untimely death. Some of this has been played out in public meetings, court rooms and lawyers offices. Some of it on flags at festivals, on buses in Asturia and much of it on social media in a campaign that has caught the hearts of thousands.

But from every angle this has been an unjust war. Why should a mother have to fight so hard for justice when her son died in an institution charged to help him, in a bath.

This is a book that should never have had to be written, but it is a book that demands to be read.

 

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Take Good Care

It has taken  a long time to identify myself as a carer, one of the almost 7 million in the UK. Increasingly, I realise that the demands of looking out for someone 24 hours a day, however much I love her, places me firmly in that camp. The additional needs which can range from providing a literal shoulder to lean on, to recruiting carers, to administering life saving medication, to witnessing horrific seizures has eventually convinced me that this is an out of the ordinary parenting role.

I was shocked recently when asked that simple question, Whose mask would you put on first if a plane was going down, yours or your daughters, to answer without hesitation my daughters. It is a cliche but a telling cliche.

It becomes a habit to think of others before ourselves. Not in some kind of angelic, saintly way but as ritualised behaviour often accompanied by, said with a hint of shame, resentment. It can be annoying, irritating and frustrating to be seen as somehow better than others, more rounded, more able, when actually what we often feel is overwhelmed by sadness and fear. The sadness that it has always been this way and always will be, and the fear that we may be unable to continue both emotionally and physically because the tank is empty.

It is an essential truth that carers need to look after ourselves but it is not something that always comes easily. Many carers have to be given permission to do this, convinced that essence of you is caring for others and time spent not doing this is indulgent, wasteful and frankly flaky.

Yesterday in a yoga class we were working towards an arm balancing pose, astavakrasana, when I ended up in a crumpled but smiling heap, not quite the desired effect and luckily no accompanying photo. The lovely, downtoearth yoga teacher explained that the pose was like dealing with a difficult person. You do not try to address all the difficulties at once, you take them small step by small step and eventually you may have a better relationship  with that person.

This is the same for carers. You cannot expect to make peace with the enormous and life shattering change that is being a carer in one step. You cannot learn to look after yourself overnight after years of neglect, but you begin to build small moments when you find yourself again. Mine are often found on the yoga mat, where do you find yours?

 

 

 

 

An Oasis of Calm

Some way down the Holloway Road there is an oasis of calm, nestled amongst coffee shops, cheese shops, petrol stations and post offices, given away only by the small orange tree on the door step- the Mahadevi Yoga Centre.

It was there that I did my yoga for the Special Child training course. Drawn there by my love of yoga and the love of my daughter, Iona, who has been attending since it’s opening in 2015.

The course was taught by the founder of Yoga for the Special Child, Sonia Sumar a Brazilian by birth with a warm, passionate, mesmerising and engaging style. She taught with a breadth and depth of knowledge that stems not only from her 45 years work in this field but also as a mother of a beautiful child with Cerebral Palsy, who has sadly passed away. Sonia bears her wisdom lightly and anyone from the quiet beginner to the experienced yoga teacher was embraced warmly.

The programme takes you not only through the physical action of teaching but also prepares you for the emotional empathy that is central to the work. At times it can be intense, at times it can be challenging but it is always stimulating.

The group of students from Canada to Belgium to Portugal to Poland, laughed and occasionally cried, concentrated and celebrated, focussed and supported each other.

It was a life changing and enriching experience and one that will resonate for many years to come.

The week that is

Learning Disability Week. I have tried rolling the label, learning disability, around in my head but it seems oddly unnatural, like a man made fibre, synthetic, discordant and contrived. I tried saying it out loud to my daughter, she shrugged in a non plussed kind of way, if she could talk she might have said, ‘whatever’

I never think of my daughter as having a learning disability. She is just herself, kooky, funny and pretty.  Continue reading

Angry Parents

‘I quite like angry parents, you used to be angry Linnet’

She was right. I used to be angry with the system nearly all the time but now I am angry only some of the time.

I used to be angry, defeated and exhausted. Then people started listening, then they started trusting and now they have start believing that all I ever want is what is best for my daughter. So now I still get angry but I only get angry some of the time. Continue reading