What I learned – GC Reflections

First Day on the Job

I was a bit nervous.   A new job in a field I had never worked in before.

My first encounter with Matthew was a pretty low key affair.  That distinctive, deep, articulate voice… “Hello. I’m Matthew”. That equally distinctive ability to make someone feel at ease.  Two minutes after meeting Matthew I was no longer nervous and I went home that day thinking, to my surprise, “I am going to like this job”.  It was meant to be a part time job to help me get through my PhD which I had been meaning to do for around 20 years but somehow never got around to it. I had been busy with a rewarding and busy career.

After meeting Matthew I knew this would be no ordinary job and certainly would not be a “just a job” to keep up with the mortgage while I was studying.  I’d had many interesting jobs, at home and abroad, most of which I really loved.

Nor was I particularly looking for fulfilment from this job.  I had achieved a lot in my career, including being the CEO of an organisation working with refugees, asylum seekers and immigrants.  Now, I was a busy mid-life student. Enthusiastic about my studies and thinking of a career change to academia.  That is still my plan. But somewhere in between, I had discovered a whole new world.  More than that, I had discovered a profoundly new way of seeing, experiencing and understanding the meaning of life. This would be no ordinary job.  These were no ordinary people. In fact I can’t think of this experience as a “job” as such. It was a learning experience in how to be a human being and it is this experience that I want to share in this story. I didn’t feel like a worker in an economy. I felt like a person in a society. And sometimes we forget that this is what we are in this busy, digitally-driven, globalised manic world which we now inhabit.

My job was to help two people move out of residential care and into their own homes in the Community.  Their names are Matthew and Valerie.  Two highly interesting, intelligent, profound, brave and inspiring individuals.  They were living in Cheshire Homes in Cork, part of the fabric of disability care in Ireland and home to around twenty people with intellectual and neurological disabilities.  Founded by Leonard Cheshire in England in 1948, the organisation was set up in to support people with disabilities. Now in 2013 the organisation was once again taking a lead and using a “Social Roles Valorisation” model. It was to the forefront in offering deep supports to people aiming to live in their own homes and not in the institutional care which had been understood as suitable at one stage in our history. Social roles valorisation is about supporting people to see the valued roles they have in society and helping them to make best use of their assets and skills, to make those roles a reality.

The world was moving on and so too were Matt and Val, the two people I was lucky enough to have been asked to support in my “Community Transition Coordinator” position.

Profound experiences are hard to articulate. But I feel that it is important for me and for those of you hearing my story, that this story is told.  Elsewhere you will hear the story of Matt and Val on this website.  It is primarily their story but my story, as part of their story, also matters.  This is part of what I have learnt. We all matter.  All our stories are valid and sharing these stories allows others to think, learn and see things from different perspectives. I am grateful to Val and Matt for allowing me to share some of the things I learnt from them on this journey.  Two very different characters yet each offering a unique perspective on what it means to be human. I write this story because I truly believe we need to reflect on why it matters that we human beings are open to the full range of experiences of what it means to be human.

So what have I learnt?

Let’s start with Valerie. Valerie thought me about the intrinsic value of each life. Valerie can only use one finger to get her around on her wheelchair. She doesn’t have the use of her arms and legs. She has faced incredible difficulties in life, difficulties I won’t share because they are not my story to tell, but major obstacles. Yet she has an indominable spirit. There are layers of pain, both physical and emotional but Valerie manages to get up every morning and somehow appreciates just being alive. We all complain so much, so does Valerie. She is a human being like we all are. But she has an infectious laugh which makes you feel like you have made someone happy when you hear it. I wish I could make people feel I make them happy.  There is immense value in that.  Just by being…to make people happy.

Yet our world has become about your value in an economy. What about your value in a society or in a community. What about how we remind people about what humanity is about? How about our value to other people? I for one find it greatly valuable when Valerie reminds me of what it means to be a human being.

The social roles valorisation model values all sorts of roles but does value work highly.  It encourages people to find a meaningful job. Yes this is important. But I really believe that we must also value just simple humanity. Somehow Valerie reminds me that we are all here on a planet together. Each of us happens to be born in a particular place, at a particular time, with a particular physical make up. We have lost sight of some things. The world seems so busy, competitive, frantic, lost. My experience with Valerie can perhaps best be incapsulated in the phrase “the unbearable lightness of being”. How can I find a way to talk about the essence of humanity. We are human being. A society is made up of all sorts of people, each with a value, but somehow we value some more than others. My question is why?

Valerie is not passive, she is part of the fabric of our common humanity and life together. She is part of us. She fills her life with many activities and friends. She continually strives to make her life as happy as it can be and it isn’t always happy. She doesn’t take part in the frenetic rat race of life. She has too much to contend with. Even wheeling along in her chair near the house to reach about 500 meters has big obstacles in itself. Wheelie bins having been left out on the pavement. Cars parked on top of or beside the part of the footpath which are dipped so that wheelchairs and prams can get up.  Negotiating this obstacle course takes time, effort and determination.

Her laughter and her genuine smile warm my heart. Not in a naieve way. I am not a do-go kindly type, I am an activist who believes in rights. And hopefully I do some good for someone. But I am warmed by her smile and its important. How she makes people feel is important. Not so many people in my life or yours warm your heart when you meet them. That is important. More important that many other things we think is important.

I witnessed her growth and blossoming as a person as she moved out of residential care into her own home. How her confidence built and she became more articulate, more grounded, more assertive. She taught me about the human spirit, about the importance of not giving up and about the ability of all of us to grow and develop. She figured out that she was a good coordinator, no one ever told her that before, no one put words on that yet she is. She has to coordinate a lot during any one day or hour, just to get through the day. She learned that she is someone whom people find funny, warm and good company.

I ask myself why people don’t make more of an effort to befriend. Its like we all, including maybe the person themselves, buy into the idea that we are sort of doing someone a favour, when there is no reason why such friendship cannot be a two way and equal encounter, like any other friendship.

We separate ourselves into professional and client.  I felt torn about this. On the one hand a need to create boundaries because it’s the professional thing to do. On the other hand the desire to make a real connection. I’m sure many people who work as care professionals struggle with this too.  Where is the balance?  If you go too far in either direction you miss something.

Like the four senior professionals at a table, with Valerie and me, telling Val that she should go to a day care centre when she was at her new house. Even I could feel the pressure and the power imbalance. I struggled  myself to inform them that Valerie hated day care centres.  So later we prepared a talk for Valerie’s future staff, whom she employed… and we said “actually it is simple. Just listen. Valerie does not like day centres. She doesn’t want to go to them. End of story.”

We create hierarchies. What some people didn’t seem to realise is that Valerie was more intelligent than they knew and could really see through all of it.  And walking beside her for a while I could see through it all too. There is a lot of crap in life, game playing, power games, vying for attention. Some preferred to see her as a complainer, when in fact she was an intelligent person who basically could cut through the crap. Others saw her as someone to be pitied.  Valerie was picking up these vibes all her life yet somehow managed to keep sight of her own self, negotiating in any one day what many of us never have to negotiate in our lives. Not to be pitied, but very practically needing supports to make simple life tasks possible.

She also appreciated the good in people. She valued so much those who treated her with respect, listened and really heard and heeded what she wanted to say.

Being heard and seen as a human being.  It is not to much to ask.

 

Matthew

An extraordinary man.  What can I say.  Another one of the people you come across in life who really does change your world and turns your ideas about life and humanity upside down. I had so much fun working with Matthew, and yet also so many profound realisations about life, I struggle to find words with which to articulate them.  These realisations go deeper than words and perhaps shouldn’t even be turned into words. Maybe they need to stay as feelings, or even painted or crafted through clay or textiles. If I were to paint what I have learned it would be like Jacob’s multi coloured coat of colour but with some pockets of grey and black, hidden away, but there.  Yet in the pockets I would also paint Mr. Smithers from the Simpsons to represent what Matthew didn’t like in life and to represent his sense of mischief even in darker corners.  In the folds of the coat I would stick on many people, cars, planes, trains, ships, politicians, historical figures and God.

But lets try words for today. If it doesn’t work, I can try paint another time. And Matthew can help me because he is an artist, amongst many other things.

Which isn’t surprising since Matthew is a visual person.  He sees the world differently than people like myself who are visual ludites. He remembers amazing facts once he has seen them writing down or in pictures.  His ipad is always busy.  If you ever need someone for your pub quiz team, Matthew is your man. He has an extraordinary brain and a vast reservoir of knowledge.  I love how he honours what he calls “my big brain”.  He has a big brain and he lets the world know about it.  There is a learning on that.  We all have talents but something about the Irish culture makes us go around saying “yera I am useless” even when we are good at something. There is an honesty about Matthew. He isn’t bragging about his big brain, he is merely telling people about it.

He is particularly interested in the Cold War. On Day 1 of my new job I had not just met Matthew but I had had a tutorial on the Cold War, international relations, vintage cars, Audrey Hepburn (especially Audrey Hepburn) and political change in Mongolia.  I hadn’t actually expected that.

From a professional point of view we were well matched. And for the “social roles valorisation” model, such matching is a good idea. Like Matthew I am an academic too.  Coincidentally I once taught a module on the Cold War, which meant that I could really chat to Matthew about the thing that he liked most. It made sense.  And we ended up attending a 2nd year history course at the university together when the lecturer kindly agreed to us being there.  Matthew was a great contributor to the class, and his homework, his pictures of the Cold War as he saw it, are still on the Professor’s office wall.

I now know more too about cars, boats, trains and planes.  Again not expected on day 1 of the new job.

But Matthew is more than a big brain.  He is a very pure person. What I learned most from him was about the basics of what is important about being human. We make the world so complex and when he speaks it all seems so obvious. Of course we want food for everyone, shelter for everyone, equality and a good life. We are so caught up in big words, international negotiations, war, religion and all the rest of it. We forget the simplicity of what human being want and need.  I disagree with Matthew’s political leanings but was happy to bring him to meetings of his favourite party. At the meetings, there were again big debates and discussions.  I’m not sure if people there were always able to embrace the value of his contribution.  Which is probably why he stopped going ..and yet this is their loss.

Add to that a bit of fun and mischief.  Matthew draws quirky cartoon characters, he talks about Mr Smithers of the Simpsons as personifying red tape and all that is bad in the world, he talks about making onion soup with nutmeg, he tells people he likes that they are like red setters. I was honoured to be elevated to a red setter when we got to know one another. He is fun to be with as well as being intelligent and good company.

But again I struggle to really find words. I’m not a word smith. Words that can say what I want to say. That he taught me more than he will ever know and taught me things the world needs to know. It’s a certain purity of spirit and a deep integrity. If I suggested something which wasn’t quite appropriate, he reminded me with his deep integrity that maybe we could think of doing it another way.  Such honesty and yet in a very understated way.  He gets it. He gets what we are all trying to achieve through courses, degrees, personal development workshops, and all the rest of it.  We are trying too hard.

For Matthew I often felt like we were living in this moment only. The future and past are less important. Lets live this  moment now. Lets watch a plane take off at Cork Airport and really see it, lets listen to Copland’s Fanfare for the common man and really hear it, lets touch a furry dog and really feel it. Now. Not tomorrow.

As for God and spirituality, Matthew has a direct line to the top.  “I talked to God last night and he told me this is what we need to do”…and you believe him.  I was once very grateful to Matthew’s nocturnal rendezvous with God when God told him to go with me to a conference he had promised to talk at but wasn’t in the mood for.  For Matthew God is as natural and as much part of his life as the Cold War, or his loving family or his very famous grandfather  Erwin Schrodinger, winner of the noble prize for physics.

When I meet others who really see Matthew, such as his wonderful carers at Sycamore House, I can sit and chat to them and Matthew and enjoy what we are together. But the next time I see patronising, staring spirits when I am with Matthew or Valerie I will run after them with a copy of this story.

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