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.


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?

 

 

 

 


Form Filling

A strange thing happened yesterday. We had a meeting round my kitchen table to fill in a form.

There were four of us,  from health, education, social services, and me.

Most of the form we crossed out, some of it was described as bollocks and someone asked who was it for anyway?

My daughters plans were simply described in one sentence to live her life as fully as possible and to continue to try out new things that would make her happy.

How Mr Mark Neary would have marvelled.

I am still in shock.

 


Some legacy

An article I wrote for the Times in September last year… my cafe dream hasn’t quite taken off but neither I am afraid  has much else…

Remember they can’t all be Paralympians

I have always loved the Olympics. I watched through the night as a child and believed one day I too could run like the wind. So when they came to my home town, I cried when Mo Farah took gold and despaired when Mark Cavendish missed his medal. I vowed it wasn’t too late to put on my running shoes, dust off my bike, swim open water in the ponds — but resolutions don’t make champions. The Paralympics were something else. I had excited texts from friends, exalting in the atmosphere and soaking up the positivity. Many left the stadium talking of the impact of the Paralympics, saying it had changed their perception of disabled people and that there must be a long-lasting legacy in our society. Sadly, my family could not join them at the Games, since wheelchair users could only have one person with them and my daughter — who has profound and multiple disabilities — needs two on such expeditions. But I desperately hope these optimists are proved right. I want the world to change from a place where my daughter lives in the shadows of society, relying on me to fight for her most basic human rights. I want that positive energy harnessed and used to make things better not just for my daughter but for all the ordinary people who happen to be in wheelchairs but will never be superhuman, in the way that I will never be an Olympian. Read More…


Just An Ordinary Day

The light breeze caught the pale linen curtains, the dawn chorus reached  its peak, the sound of giggling came through the painted floor boards from the room below. My gorgeous daughter awoke at 5.30 and started her day with some energetic bouncing, small white limbs rhythmically pulsing, head bobbing and abs contracting.

It took a few more hours till I crawled down stairs, hair rumpled, face creased and dressing gown drawn. Two cups of strong coffee and an incomplete crossword later the screaming started, the seizure began. 20mg of diazepam and 30 minutes later it came to a stop. My daughter lay spent in her little bed. Cath Kidston duvet covering and dolly cuddled, she slept. Read More…


A life changer

Often in the last 2 years I have stood in rooms full of people and talked about how my daughters personal health budget has not just changed her life but changed mine too.

I was brought up in a Scottish village close to nowhere, with a view over a flat top island, silver sands, and stunning sunsets when the sky turns bronze and burnished red. A place to roam free with bikes and dens and burns, sunburned noses and freckles in the summer, wellies and woolly hats in the winter. There was one school, two churches, three pubs, endless skies, soaring seagulls and salty storms. Lobsters crawled from pots across kitchen floors, errant dogs chased sheep, and bog myrtle, sea pinks and rowan berries marked the seasons. Read More…


The road to nowhere

At Naidex last week, in a flourescent-lit aircraft hanger of a room where the air didn’t move and the colours were bright, a strangely populated world of men in suits, hi-tech wheelchairs, bolshie youth, endearing smiles and earnest faces mingled.

I was only there for the day helping out at the Peoplehub stall, a community interest company set up by people with or interested in personal health budgets. With the help of a few notepads and some Crackerjack-style pens the conversations flowed. Read More…


A whimper not a bang

April has started with a whimper not a bang, strangled by greyness, crippled by cold and compounded by welfare, death and orphanages. That’s what the view from the hill looked like this week.

Maybe I should stop following the news, switch off twitter and bury my head in fiction and films. Maybe I should stop running and try slow walking, take a long bath rather than a quick shower and fill my days crocheting, gardening or baking. After all it might do as much good as looking at the world and watching things get worse. Read More…


We can’t hear the parents

 

All of my daughter’s life I have fought hard to make her life the best it can be. This has taken me from being a laid back individual to the verge of a nervous breakdown and back. I have in my time been labelled neurotic, challenging, difficult, over-protective, pushy, demanding and unrealistic. At times, I may have been some of these things. I do not apologise. And I know, despite the fact we are now quite settled and work well with the professionals around her, I would not be afraid to fight for her should the need arise again. Yesterday we heard that parents of young people in Winterbourne View were amongst the most disenfranchised parents in the country. How did that happen? Read More…


Communication without words

Yesterday my daughter made me laugh. I asked her if she would like to help me with the garden this summer. She sighed very deeply and made her feelings very clear. When a good friend asked her if she would like a job handing out leaflets for H&SA at a Learning Disability Conference, again she sighed deeply, looked way and dropped the leaflets. We have video footage of her turning her head away as a music teacher bounces and bangs a big orange ball in front of her. It is abundantly clear what she thinks! Read More…


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