Spring is just around the corner

Advent is my favourite season of the church calendar. I love the ancient and expectant chants, carols and hymns. I love the four purple Advent candles lit each week marking the build up of excitement towards the beautiful white candle of Christmas day. I love the fact that just as a pendulum slows as it reaches the end of its swing, the nights continue to get slightly longer until just before Christmas when slowly the process goes into reverse, and, as my cheerful dad always says, "Spring is just around the corner". As a child I thought this was a ridiculous exaggeration, but now, as I get older and the earth's orbit around the sun seems to speed up each year, I know exactly what he means and share his optimism.

We have just returned from an overnight stay in Salisbury, which began with a visit to Stonehenge. We were early enough to avoid the crowds which helped us to appreciate the lonely beauty of the place. The ground was frosty, and the low, dazzling sunlight cast long shadows away from the huge and mysterious stones. Nobody knows why these stones were placed as they are, but we can only be amazed by the skill and precision involved in the design of the site, and the incredible effort needed to transport the stones for many miles over land and sea, some from South West Wales. The monument clearly served some kind of religious purpose, connecting humans to the mysteries of the sun and seasons.  More than three thousand years later this same sense of awe and reverence in the presence of the divine inspired generations of craftsmen and labourers to create one of the most beautiful cathedrals in England at Salisbury. And these monuments are still standing and able to lift us above our mundane lives - to me this is part of what Advent is about.

Advent and Lent are the two reflective seasons in the church year. Lent is a period of personal reflection on our own weaknesses and need for forgiveness but Advent tells a universal story of creation, of gestation and of hope. I think it is less about me, and more about our world and its need to connect with the divine.  It is about looking forward in hope as our readings remind us each week - starting with God's people, and circling ever closer inwards past the prophets, John the Baptist and Mary until we focus in on the tiny newborn baby with his poor family in temporary and squalid accommodation away from their home.  What could be more mundane than that? It is an everyday story of a baby born in an ordinary family, and yet you would struggle to think of one that has had a more extraordinary impact. Nobody is too poor and unimportant to connect with this story.

Salisbury Cathedral also hosts the Magna Carta and a small exhibition around it. Within the constraints of a feudal society this important document enshrines the rule of law over free men, and the freedom of the church to govern its affairs. The exhibition explains the link between this early agreement, the English Bills of Rights in 1688, and more recent declarations of human rights.  It also includes some inspiring quotes, such as those below, and examples of how the legacy of the Magna Carta has inspired people to fight for freedom from oppression and for equal treatment in the face of discrimination.  Next year it will be 800 years old, reminding us that the human quest for rights and freedoms will continue.

Although Advent is my favourite season it is also the most exhausting part of the year, with extra events, Christmas performances, work parties, and preparations adding impossibly to our schedule which is pretty hectic all year round. In centuries past Advent would have been a season of fasting and quiet preparation, followed by twelve days of celebration for Christmas, but now it is the other way round with a long period of excesses and expenditure ending with a post-Christmas detox. I usually find this a bit disappointing, and this autumn I have also been feeling depressed by the increasingly divisive rhetoric from our politicians and media, and our society's ever growing inequality and distrust. Also several good friends have found themselves suddenly in tragic or frightening situations and this has felt overwhelming. I wasn't much looking forward to anything, but I have been surprised by a strong sense of peace and hopefulness over the past couple of weeks. Some deepening friendships and small encouragements have shone out for me like candles in the dark.  I am excited about Christmas approaching and the joy of the incarnation - of "God with us".

I have struggled to write this post as I am finding it hard to put my muddled thoughts into words and connect things together properly. Thankfully this poem, which I heard this morning, seems to sum up exactly what I am trying to say. So I will end with it:

Advent Calendar (Rowan Williams)

He will come like last leaf's fall.
One night when the November wind
has flayed the trees to the bone, and earth
wakes choking on the mould,
the soft shroud's folding.

He will come like frost.
One morning when the shrinking earth
opens on mist, to find itself
arrested in the net
of alien, sword-set beauty.

He will come like dark.
One evening when the bursting red
December sun draws up the sheet
and penny-masks its eye to yield
the star-snowed fields of sky.

He will come, will come,
will come like crying in the night,
like blood, like breaking,
as the earth writhes to toss him free.
He will come like child.

My iPhone photo of Salisbury from Old Sarum - site of the earlier cathedral and medieval castle.

It's not fair!

One of the things that amazed me about my children was how quickly they developed a very strong sense of fairness.  Almost before they were able to talk they would look enviously at other children's toys or food and want their share. This seems like innate and not learned behaviour to me.  My husband and I do not spend all of our time arguing for a fair share of things - well not usually toys, but maybe whose turn it is to get out of a chore!  A sense of justice seems to lie as deeply in humans as our traditional five senses.   As my children have grown older this sense of fairness has led to many squabbles, but also to cooperation and sharing at other times.  A bit of Google searching brings up academic research showing that this sense of fairness is inherent in many other species too.

A few weeks ago I was drinking tea and eating cake on a Saturday afternoon with some friends, and one of them was talking about preparing for our church Sunday School session the next day. The story she was going to tell was Jesus' parable of the workers in the vineyard - where some workers were hired at the start of the day and agreed to work for the pay they were offered, but then others were hired at various points during the day to join the first shift. At the end of the day the manager paid everyone the same amount. The ones hired in the morning were not happy as it this did not seem fair to them. This scenario lies behind the huge upheaval in pay over the past few years in public sector organisations, where attempts have been made to equate jobs normally carried out by male workers, such as emptying bins, with jobs more usually taken by women like classroom assistance roles.  Most people agree that it is important to put this injustice right, but it only goes so far and puts a sticking plaster on an increasingly large problem. It doesn't seem to be fair to me that a city banker or footballer should earn orders of magnitudes more than a carer or teacher.

The Sunday School teacher friend of mine, who is a lawyer, was going to teach the children about the importance of being content with what we have been given and not always comparing ourselves with others. A content person tends to be much easier company than someone who is always complaining that life is not fair. One thing that always amazes me about Immy is how content she is, on the whole.  Sometimes she does complain about how hard things are for her compared with others, but normally she is happy to watch others succeed and prepared to accept that most things are harder for her than they are for other people. It's often me that's fighting against the injustice of it all, on her behalf. The old and new testament writings contain a range of messages on this subject, some focussing on the need to be content with one's lot in life, where others are more concerned with the fight for justice and freedom from oppression.

I was talking about the story again, with another friend who is not religious, a few days later.  We observed that when our husbands were away with work we tended to have a calmer atmosphere at home with fewer arguments about getting the children ready for school etc, and this is because we had to do it all and there was nobody in the other room to feel envious of, or competitive with. Tired yes, but not so grumpy!  I'm sure my husband finds the same thing when I am away.

Studies with animals have shown that in more stable and long-term social groups this sense of fairness is less pronounced, which makes sense really - and this is what we observe in our human societies too. It doesn't bode well that, by all accounts, we are one of the most unequal societies in the Western world, and becoming rapidly more so. It heightens a general sense of injustice and pits us all against our neighbours.

So I must learn from Immy's example and try to be grateful for, and content with, what I do have - and yet continue to fight for greater fairness in the world around me. Because I can do something about some of the things that are unfair. I can vote, I can do my research and campaigning and speak up whenever I get the chance.

But there is some unfairness which is extreme and impossible to rationalise or do anything to prevent.  This has struck me forcibly over the past fortnight. Three lovely friends have been landed unimaginably hard blows, completely out of the blue in each case. One has lost her husband suddenly, one has a child diagnosed with cancer and another has lost a baby grandchild unexpectedly.  I've been writing this blog post, but at this point I really have nothing more to say. It's just not fair.

So I guess my conclusion is that life is often deeply unfair and there's absolutely nothing to be done about it. Taking Imogen as an example, there's little point in dwelling on the unfairness of  being born with cerebral palsy and the numerous challenges this brings. There are other unfair things about her life, however, and the lives of other people, that I can fight to change. But on a personal level it is important for me to steer clear of being envious of others, and to balance my campaigning and fighting with some thankfulness and contentment.

Beggars and benefactors

Whenever we received pocket money or gifts of money as presents my sister and I were taught "it is more blessed to give than to receive" and encouraged to put 10% aside for our church collection and another 10% to save to buy presents for people. I didn't much like this at the time, since it meant that it took longer to save up for things I wanted to buy, but I am grateful now for the lessons it taught me about patience and generosity.  I try to instil these values in my own children, less successfully I think.

Giving is big business now.  According to the NCVO, using ONS data, the total UK voluntary sector income in real terms increased from around £30bn in 2001/02 to £40bn in 2007/08 and has remained steady since then despite the economic downturn. These figures include public sector funding which varies a lot but amounts to around a third of the total, on average.  I work for the Welsh Government and it is striking how "working in partnership with the voluntary sector" seems now to be the proposed solution to the funding cuts in services to vulnerable people. As central government allocations to local government continue to plummet and the NHS faces rising costs due to demographic changes and other things, we depend more and more on public and private donations and on people working for nothing to plug the gap.  This relies on all of us giving spare cash to worthy causes, putting bags of pasta in the Foodbank box at the supermarket etc. And it's getting easier and easier to give - a couple of clicks on my phone is all that's needed to send a donation.

One of the difficulties with this "Big Society" model is that it divides people into the beggars and the benefactors.  In an effort to move away from a society where people feel entitled to education, healthcare and welfare payments without taking any responsibility for contributing we are in danger of heading back to a "Victorian" (for want of a better description) world of beggars and benefactors where "beggars can't be choosers", and those of us receiving more than we are able to give to society are expected to be grateful and not complain.  And wealthy benefactors are allowed to bestow their generosity where they want (rather than contributing to the shared public purse) with no questions asked about the sources of their wealth.  We are supposed to look up to them simply because they are rich and famous.

Over the last couple of weeks I was watching with bemusement as my Facebook news feed filled up with videos of my friends being doused in icy water. It was by turns interesting, amusing and a bit boring watching people going along with it as a bit of fun, some of them donating to the cause and others possibly not.  But there were other people complaining too - about the waste of water, the stats which suggested only half of those "taking the challenge" had made a donation, and the gimmicky nature of it all.  There were concerns that it was just silly exhibitionism and demeaning to the dignity of those with motor neurone disease. If the challenge had been to raise funds for our charity to help children with cerebral palsy I'd have had mixed feelings too, but mostly we would have been delighted with the massive windfall and publicity, and the knowledge of how much this extra money would help to fund research, equipment and support. I knew I wouldn't get away without doing it myself, and sure enough eventually someone "nominated me", Owen did an excellent job of drenching me - the uncomfortable process expertly recorded by Immy on our iPad.

Exhibitionism has always had a big role in charitable giving.  For many businesses and wealthy individuals it's the name plaque on the wall, the publicity, the accolade and admiration at the charity dinner etc that motivate giving, along with the tax breaks.  We all have the option of hiding our donation amount on a Just Giving site or making the gift anonymous, but it can be just as important for us to be seen to be giving as actually giving.  We received a few large anonymous donations when we were raising funds for Imogen and they did make me wonder whether I would have been prepared to do the same if the shoe was on the other foot.  Another saying of Jesus instilled in me as a child is: "when you give to the needy, do not let your left hand know what your right hand is doing".  In fact a much higher proportion of Jesus's sayings are about giving to the poor than the proportion of time we spend talking about this in our churches.

If giving is hard, receiving can sometimes be even harder. It was very difficult for our family to place ourselves firmly and very publicly at the receiving end of things.  It marks you out as different, placing you on the other side of a transaction to your friends and acquaintances and sometimes brings embarrassment into relationships.  I am conscious, even two years on, of the importance (quite rightly) of not being wasteful or extravagant.  I've always been determined, independent and hard-working and it has been so difficult for me to say "I can't do this on my own - I need help".  I struggle with this daily - often finding myself refusing offers of help for example in getting Immy's wheelchair up some steps - and then seeing a confused, embarrassed or disappointed face and wondering why on earth I said "it's OK thank you, I'm fine".  Who did that help?!

In reality I'm not all that good at either giving or receiving.  I rarely make a financial gift that makes a painful dent in my finances.  And I'm often a less than gracious accepter of gifts and help.  So there's lots for me to work on!

Steel-clad castle - an icon of inequality?

A statue of Nye Bevan looks over towards Cardiff Castle from its plinth at the end of Queen Street.  I walked past the other day and wondered what he would have thought if he was alive and standing there - as the huge metal barricades block his view of the Castle and other iconic buildings, causing traffic jams throughout the region, closing schools, requiring nearly 10,000 extra police officers and costing an unspecified fortune - and all in a part of the UK where the NHS he worked so hard to put in place, and most other public services, are close to financial breaking point.

When we first heard that Obama and the NATO entourage were coming to Cardiff it did seem quite exciting. We were told the region would benefit financially through a boost to trade and extra funding.  But now it's hard to see how that can possibly happen when we're all advised to avoid travelling and keep well away if we can.

Will any of the regular people of Wales catch a sight of the President or any other world leader as they purr along behind the steel and are ushered inside to enjoy their high-end Welsh cuisine? Very unlikely. Will the delegates pay any attention to the demonstration outside calling for economic justice and peace? The beheading of an American journalist is nothing other than horrific and appalling, but why is it so much more appalling than the indiscriminate killing of hundreds of "nameless" mums, dads, children and siblings each day in the middle east, and the misery reported on almost every page of my newspaper today from all around our globe?

Yes, our world leaders need to talk to one another. They need to listen to one another, and more importantly they need to actually listen to the people of the world and not barricade them out of earshot.  It's hard to believe in Western leaders who preach about freedom and democracy from fortified castles, and carry on cashing in from arms sales around the world.  It's hard to give money to international aid efforts with enthusiasm, when we suspect that global corporations hover overhead like vultures ready to sign lucrative contracts and cash in on the suffering and rebuilding efforts.

What is about to go on here in Wales feels like a large-scale parallel to my week-in-week-out struggles to be listened to when I talk about the injustices faced by children with disabilities, the rationing by prevarication and bureaucracy, and the unnecessary exhaustion faced by their families.  Richard Dawkins' comments on Twitter about the supposed moral obligation to abort a foetus with Down's syndrome have provoked outrage, but "it's so sad" is still a common response to children with disabilities.  He maintains, whilst pretending to apologise, that his view is logical.  But the real problem for him is that he has clearly never known anyone, intimately, with Down's syndrome and  appreciated their value. In fact, as several special schools across the Vale of Glamorgan close and reopen on a single site in Barry, following a similar pattern in Cardiff, it's starting to feel like we have made a U-turn in society and are now on the road away from disability equality.

Rather than a beacon of hope, this steel-clad NATO summit increasingly looks like a miserable monument to all that is wrong in our increasingly unequal, violent and distrustful world.

Eat your vegetables!

I was reading Oliver Burkeman's column in yesterday's Guardian - about the challenge of getting children to eat vegetables and do other things that are "good for them". As well as being generally contrary, which thankfully most people grow out of, children want to live in the moment, to simply be and to seek pleasure. Oliver suggests that just putting vegetables in front of children and telling them to eat them because they are delicious would work better...... Maybe!

Owen is learning the piano and loving it. He practices without being told each day, and I think part of this is that I try hard to get the balance right between getting him to persevere with pieces he finds difficult, but also leaving him to put his pieces to one side and just explore different sounds and figure out the songs and the TV theme tunes that are playing in his head. He needs to enjoy the process of learning and not just the progress and the competition with his classmates, although these are also motivators.

I've been struck lately by my own attitudes to my two children as they learn and develop. Imogen's cerebral palsy has meant that she has not naturally had the same opportunities to explore as Owen.  Compared with other children her age her spatial awareness is less sophisticated and position words such as "behind", "next to" etc still cause confusion. How much of this is due to her lack of opportunity at a critical time when other babies are starting to move about, fall over, manipulate objects, poke things into holes etc?  How much is due to damage to the part of her brain that controls this understanding?  It's hard to say, but it is clear that her parents and teachers have an essential role in identifying these gaps in the building blocks of her learning so that she can make solid progress.  This applies to almost everything - personal care, physical development, reading, numbers etc.  For someone as lacking in patience as me this is a very slow process that can be deeply frustrating.  It also means that sheer relief can detract from my pleasure and pride in her achievements.  Owen, on the other hand, seems to make progress all by himself, taking every opportunity to ask difficult questions, climb on things, draw and write and figure out which piano notes sound nice when played together.  And I mostly just watch with pleasure.

This morning at church our vicar Trystan was talking about how our fears can paralyse us and stop us from enjoying the journey.  He is fearful of flying, but I think my biggest fears are about the future.  Both of my children are making really good progress, but when I look ahead what do I see?  Will Imogen be able to pass exams, get a job?  Will she be able to do things in her life that are valued by others and by herself?  And what about Owen?  As inequality increases in the UK it is hard to look ahead without anxiety.  It's no good just getting a degree now; it has to be a good degree from a top university or your child might still not be able to find a job, or have to do three jobs to pay the bills. So instead of just enjoying Owen's progress maybe I need to check that he's ahead of others his age so we don't lose out in the big competition of life.  Obviously I can't deny that this competition exists and escape from it entirely, but I must make sure I don't let the fear and anxiety dominate.

If I'm not careful all of this anxiety relegates my children's childhood simply to a period of preparation for adulthood.  That is crazy when you think about it, because childhood in many ways is the best bit! Do carrots exist only to provide you with essential vitamins so you "grow big and strong", or are they also about enjoying the experience of growing, preparing and eating them? Is a run in the park just about getting a cardio workout to avoid getting overweight or getting into the first team, or can it also be about enjoying the experience of running, the sounds, smells and wildlife around?

So, will Imogen will be able to do things with her adult life that are valued by others and herself?   In fact she is doing those things every day now.  She brings and derives huge pleasure to and from those that she spends time with, as well as with a large community of people who follow her progress online. Did Jesus say "Let the little children come to me, and do not hinder them, because they are the  leaders of the future"?  No. He said "for the kingdom of heaven belongs to such as these".  Now.

An upside-down kingdom

Here's a "normal" person.  What makes him feel like he's properly fitting in? What should he aim at to make him happy and successful? 

Most adverts we see on TV are about persuading us we can be a bit more like this ideal - if only we were to spend money on this or that product.   I think we are constantly, every day, comparing ourselves to others against these things, often without realising it.  We want our children to be able to measure up against them, and our schools to focus on them. These are the things we've all been deeply conditioned to value and aim towards.

And yet who can actually match up to this ideal? Who looks at this list and thinks "yep, that's me!"? Well you're not independent and self-sufficient as a child.  And we can't measure up to most of these things when we're elderly.  Most of us don't match up for chunks of our lives when we're ill or grieving or things go wrong. If you have a disability lots of these may be unattainable goals. In fact, at best only a FEW of us can achieve all of the things on this list for PART of our lives, so why is it considered "normal"? And what about the rest of us? - i.e. most of us.  We simply don't make the grade!

Journalist Madeleine Bunting wrote about how we have commoditised everything, even our language has changed - "personnel" has become "human resources". Maternity leave and childcare is about “investing in our children”, who are the “economic units of the future”.   "Are we economically active?", is the all-important question - so where is the value in caring for someone who is old and frail, or has a disability that limits her potential to make money?  Madeleine points out that dependency is a central part of life and not something to be ashamed of and avoid.

And I think that the pressure to be normal can actually make us like this:

So that’s the “normal person”.  What about how a person with a disability is seen, by society and sometimes in the church too?  We also have to acknowledge some of the more damaging viewpoints in our Christian heritage, and that or other faiths, at the bottom left in the picture below.

It’s easy to see how a person can feel “objectified” by all of this rather than valued - even some of the more positive stuff.  To value someone I think you’ve got to get to know them – and this is often not easy.  That’s the reason why I campaign for more inclusion in education and in society.  Because when people really get to know my little girl their perceptions of disability change.

Disability does get a rather mixed treatment in the Bible. There's some fairly uncompromising exclusions of people with impairments from activities in the temple, some equating of types of illness with ritual impurity.  This continues with some New Testament language too.  We sing: “Amazing grace, how sweet the sound that saved a wretch like me. I once was lost but now am found, was blind but now I see” without stopping to think how that feels to someone who is blind.  Christians can have a particular problem with disability, and that stems from the fact that Jesus healed so many of those with impairments that came to him. We believe that God can heal, we are certain that he would want to heal if he is good, so why doesn't he? Why doesn't he repair the damage to Immy's brain and set her free? Is it because she and her family lack faith?  Are we not praying hard enough? These are the uncomfortable problems that many Christians struggle with, sometimes unconsciously.

I observe that God created a universe, and our world, full of cycles - and that it was this world that God saw and said was good. The design of every living thing includes a cycle of birth, maturity, decline and death. A world without death would have to be a world without birth or else it would be over-populated. And yet "being fruitful and multiplying" was part of the creation narrative. in the book of Ecclesiastes we read that there's a time for all these things. "And God saw that it was good". Certainly much suffering in our world is the direct result of human sinfulness, but some is not.

Mankind is made in the image of God - we are creative, we are relational and with relationships comes vulnerability. God is described as sorrowful and saddened by broken relationships on very many occasions in the Bible. Vulnerability is there at the heart of things, within God's own heart. I'm not convinced that independence, strength and physical perfection are the easiest places to start if you want to find God.

If we're looking for the miraculous healing of Imogen's damaged brain and sudden ability to walk... if we're looking for the immediate elimination of an extra chromosome or genetic condition, the total eradication of a cancer, restoration of sight etc.. If we just focus on these things then we can fail to see the healing that might happen through the welcome and generosity of a community, the skill of a doctor, the determination and hard work put into therapy... These have been our experiences of healing, and they feel miraculous, in that they are touched by God. Do we need to feel that Immy has made MORE progress than other children like her to see that as an answer to prayer? Of course not! Do we need to distinguish between "normal" and "supernatural" healing?

We can talk about Jesus's healing ministry and the purpose of it, but a few things are quite obvious. Jesus probably didn't heal everyone he came into contact with - and 100% of those he healed eventually succumbed to something, or got old and died. The same is true today.  Jesus explains his healing ministry when his disciples ask him about his healing of the man born blind. They asked him, "Rabbi, who sinned, this man or his parents?" Jesus answered "neither this man nor his parents sinned; he was born blind so this God's works might be revealed in him."

I don't think the act of healing can be separated from the welcoming touch of Jesus.  Jesus' healing ministry was all about restoring people to wholeness and an accepted place in their community. It was usually accompanied by the forgiveness of sin - spiritual wholeness. To focus simply on an extra-ordinary reversal of illness or impairment is to miss all of that, and to be ultimately rather disappointed.  The thing that strikes me most about the gospels is the way Jesus touches the people he meets, metaphorically and often physically: the ten lepers, the blind man, the paralysed, the Samaritan woman, people with leprosy, the prostitute, the mentally ill, tax-collectors - the list is lengthy.

God's kingdom is an upside-down kingdom where Jesus overcomes any natural human revulsion he may have had towards the sick, smelly, diseased and reviled. He reached out and physically touched people who were untouchable.  If we find that hard to stomach then rest assured it was harder in that Jewish society. Jesus was turning himself unclean and outcast by association, he was risking fatal infection. His dinner party has the poor, ugly, annoying, no fun people at the top of the table and the cool ones at the far end. And actually most of the cool ones didn't bother to show up.. So he sent for the sick, disabled and the outcasts. 

In affluent Christian communities we can find the theology of the epistles easier to engage with than the gospel narratives. We can argue the fine points of theology very happily, and focus in on our own spiritual lives, but it's hard to take this Jesus stuff. We can't "spiritualise" it - it's gritty and real.  And we are called to follow Jesus.

Clearly it's not a bad thing to teach our children to work hard, be disciplined, persevere, aim high, achieve and be successful. But the Bible only has a very small amount to say about this. It isn't the self-confident and "empowered" that will inherit the earth, but the meek and poor in spirit. Following Jesus isn't about a protestant work ethic, it's actually about compassion.

I read Trystan Owain Hughes' book The Compassion Quest last year and it made a big impression on me. Compassion is not the same thing as pity. It is about recognising the very essence of God in all people that he has created and identifying with others.  We must listen to Jesus' own words on the subject, in Matthew 25: "Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?" The king will reply "I tell you the truth, whatever you did for one of the least of these, you did for me".

And this is true of all of our neighbours - in God's eyes we are not superior by being British, Christian, intelligent, youthful, physically strong and attractive... And it is God's eyes that matter.  In fact God's kingdom is upside-down. In Corinthians Paul says: "God chose the foolish things of the world to shame the wise. God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things - and the things that are not - to nullify the things that are, so that no-one may boast before him”.

Servant King, watercolor on canvas by E. Wierenga, www.etsy.com/shop/canvaschild

I do a lot of campaigning in my spare time - for greater equality for children with disabilities, for example improved wheelchair access to schools.  So the word “Equality” jumps out at me from this passage in the letter to the Philippians: 

“Have the same mindset as Christ Jesus: who, being in very nature God, did not consider equality with God something to be grasped.  Rather, he made himself nothing - taking the very nature of a servant… and humbled himself even to death on a cross.”

So the challenge for me, with my privilege, is this: I should aspire to servanthood.  For the person who is vulnerable and overlooked - his place is at the top table.   

A quote from book called Vulnerable Communion - by Thomas Reynolds:

"The love of the cross is not cheap or sentimental, but love that compassionately suffers with the other. It is possible to suggest that, through the cross, Christ becomes the disabled figure of God, the icon of a God who undergoes physical deformity and stigmatisation, and retains the scars... For the sake of love".

I can do it by myself!

I've been asked to speak at a conference at UWE in Bristol this week about "Building Understandings" (child, youth, family and disability) - I'm speaking alongside two physiotherapists about how disabled children can participate in recreational activities, particularly cycling.

The star turn of our presentation will be Imogen herself, her words and images recorded as a "digital story" by a sound recorder and photographer as part of their bigger "One in three million" project to document Wales through its people.  Have a listen!

Immy's digital story on YouTube

This is a lovely photo of Immy on her bike, apart from the fact that she doesn't have her helmet on.  She did take a tumble shortly after the picture was taken, and never goes near her bike without her helmet on now!

My co-presenters will be talking about how they set out on a research project to measure changes in muscle strength in disabled children as a result of regular cycling, and the impact of other factors.  But what they learned was something far more important - about listening to the VOICE OF THE CHILD in designing services and support to enable participation and activity and fitness etc.  Hence our digital story!

It might sound blindingly obvious, but for many healthcare professionals it is a huge struggle to move on from the "medical model" of disability - where the intervention is all about targeting the abnormality or problem immediately presenting itself - to see the person.  So we can spend a long time choosing the right bike, and getting all the right bits and pieces attached to it, and fail to notice that that's just a baby step towards helping Immy to join in cycling with her friends or family.  There are several much bigger obstacles...  These are just some of them (put into Immy's words, although she hasn't actually voiced all of them herself):

I'm going to conclude my little section of the presentation by talking about three 'E's that are embodied by the most helpful professionals we meet, whether from the NHS or education or social services. This is not to criticise people who are burdened by impossible case-loads, ridiculously small budgets and their own work insecurities and pressures - I often fail to embody these qualities in my own work, where they would also be useful.  In fact these are actually ways of being, thinking and relating that really don't cost anything extra, but can make a world of difference.

Equality

We don't want our children to miss out on experiences and be treated differently because they have disabilities.  Sometimes this is inevitable, but normally there's a way to make things work.  Immy's experience at Llangranog on her school trip is a case in point, as was her Brownie camp.  Everything was organised to make sure she could participate, and everyone enjoyed things more as a result.  The point about disabled children is that they do have rights, enshrined in various laws and charters - around which, at best, boxes are ticked and lip service is paid.  I personally think these might include the right to be left on your own for a bit to be bored and find your own entertainment, the right to go off in a strop and sulk in a corner, and the right to take risks.  It's easy to hide behind resource constraints, health & safety, manual handling, child protection procedures to avoid making the sometimes quite small effort needed to think of a workaround.  Luckily we work with many professionals who are even more obsessed with making things work for Immy than we are.

Empathy

It doesn't cost me anything to put myself in the shoes of the person listening to what I am saying.  Trying to understand whole family aspirations, constraints (e.g. to the hours in a day) and challenges makes any solution more likely to be workable.  Fortunately we meet loads of professionals who are wonderfully empathetic.  I can't overstate what a huge difference this makes - it's even so much easier to deal with bad news if it is delivered with empathy.  On the other hand we do meet the occasional person who brings their office out with them on a home visit and stands behind the imaginary bullet-proof screen..

Expectations

It's amazing how often I hear about children, who are active and progressing well at school, but whose parents were told when they were diagnosed that they would probably never walk or talk or do this and that.  Prognoses on tiny infants with cerebral palsy are often so wide of the mark, it's surprising how often they are given.  I guess it's helpful to know in broad terms what the immediate challenges will be, but we can only deal with each day as it arrives.  It's infuriating when you are told your child is "not presenting as an active user" at a wheelchair appointment - so they can be given a cheaper heavy machine - when you know they'd be able to manoeuvre themselves in a chair designed for active use.  It's annoying when you're told your child mustn't work out because it will cause them to adopt bad postures and damage their bodies - when you know that it's also important for them to build strength, get their heart-rate up and strive to be as fit and strong as possible.  All humans are limited in what they can achieve.  Athletes will keep breaking sprinting records by ever decreasing margins, but it's probably safe to say that no human will ever run 100m in 2 seconds.  Children with disabilities have limits to their potential, but none of us really knows what those limits are.  We often talk about wanting our children to "achieve their potential" but we don't know what that is - so we should never be told to stop trying.

When I listen carefully to the voice of my child this is what she tells me. Instead of just watching from the sidelines she wants to be treated equally and given the same opportunities as her friends.  She wants people to take time to listen to her, and to try to understand what it is like for her.  And she wants people to share her aspirations for the future, to praise her progress and encourage her to achieve more.