Sunday, 29 June 2014

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,

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".

Sunday, 8 June 2014

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.


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.


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..


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.