Friday, 27 January 2017

I choose.... not to judge

I was sickened by photos of President Trump signing orders to ban money going to international groups that fund, or offer advice on, abortions. I was sickened because this is a man who thinks it is OK to brag about sexual assault, surrounded by privileged men, signing an order about things that happen to women in far away lands where people are poor - so many orders of magnitude poorer than himself - and invisible to him. In far away lands where young women are routinely raped by soldiers, where the stigma of unwanted pregnancy lies heavily on a whole family and can be a death sentence for the mother. Where disability is unsupported. Where even today childbirth itself is terrifying and can kill, especially very young women.

But I'm also sickened by risk-free foetal testing methods developed now which allow parents to decide to abort a child with Downs' Syndrome.. and what next? Low IQ? I am appalled by the double standards that allow professionals to sign up to statements of equality, including for those with disability, yet for some reason this disability equality does not extend to a foetus. Why is it OK to dispose of an unborn baby with a different number of chromosomes to me - who could live life to the full and bring joy to those around? I am also aware of how hard work it can be bringing up a child who has Down's Syndrome (or any other disability) with insufficient support.

I am also quite sickened by pictures of women with placards claiming that abortion is just about their bodies and their rights.

The big problem behind this whole debate is not so much about a woman's right to choose what happens to her body. Usually pregnancy and childbirth, whilst having an enormous effect on a body in the short term, have relatively little long-term impact. It's rarely the woman's body that is the issue, it is far more usually the impact of a new baby on the woman's life, finances, independence, prospects and acceptance in society.



If we lived in a society where all pregnancy was celebrated as the potential for a new person with equal value irrespective of the age, marital or financial status of the mother - or the physical or mental capacity of the new person... If we lived in a society where whole communities, extended families and neighbours came together to help teenage mums instead of judging...  If we lived in a society where equal responsibility for pregnancy was applied to both parents.... If we lived in a society where disabled children were truly valued as equal members of society and provided with the practical and moral support and funding needed for them and their parents to thrive...  If we lived in a society where it's the norm for wider family members to take on the care of children if parents are unable to fulfil this role (and I know many wonderful families that do just that)... If we lived in a society where having a baby before 30 did not mean saying goodbye to career prospects or being able to save for some security for the future.... If more of us were prepared to adopt a child that cannot be cared for by her or his parents...

... then maybe there'd be fewer abortions and more life.

But we don't live in that society. And in poorer parts of the world the stigma of unmarried motherhood (not so much fatherhood) is more severe, financial support for parenthood is non-existent, and disability is a poverty life-sentence for child and parents. Who am I to judge?

As I go through life increasingly conscious of my privilege, and painfully aware of my own failings, I feel less and less inclined to pass judgement on other people. A decision to abort is rarely taken lightly, and can be profoundly difficult and leave long-term emotional scars. Caring for a child without the necessary support can be extremely challenging. Watching a severely disabled baby struggle to survive through numerous painful surgeries and interventions is horrendous. Who am I to judge?

I am pro life

I am pro equality - the equal value of every human

I am pro caring for people who are struggling

I am not anti abortion in all circumstances

I am anti judging

Saturday, 24 September 2016

Down with Mr Fox!!

Last weekend I became an angry farmer chasing a fox, as part of Cardiff's Roald Dahl centenary celebrations. With my children and a group of 20 or so fellow random volunteers from South Wales we charged about in tweeds and flat caps through large crowds brandishing spades and bellowing in pursuit of an acrobat dressed as Fantastic Mr Fox. I was never one for drama at school and haven't done much role-play. It was all a bit chaotic and ridiculous, but what surprised me most was how being part of a group, surging forward and shouting aggressively, made me feel. Even in this crazy and fictitious role, the adrenalin rush was like a powerful din, drowning out the placards and pleas of the "Save our Fox!" fan club we bumped into.




During the Olympics and Paralympics I was reflecting on how easy it was to ignore the super-human efforts of so many incredible athletes in the process of desperately willing a British competitor to beat them. It was amazing how exhausting it was just sitting about about on the sofa and pointlessly raising my voice and heart-rate in support of an athlete thousands of miles away! I don't think of myself as particularly patriotic - I'd describe myself as British, European, English probably in that order, but these nuances disappear completely when I'm watching a race. I'm not Welsh but when I'm watching Six Nations matches I suddenly feel very Welsh and annoyed with the English team when they score.


Our human group instincts are very powerful - instincts to form groups, to support ourselves within our group, to defend our group and attack enemy groups. While most of us would probably believe, in theory at least, that all humans are born equal and are equally valuable, there are powerful forces within us that can work against that. This is especially so when our interests are threatened, and more so again when we feel we are in danger. I can see how easy it must be for threatened and angry groups to dehumanise other people and quickly become violent.

I'm reading a book by Jonathan Sacks at the moment called "Not in God's Name" - examining the history of religious violence. I've not finished it yet, but it is a very interesting read for anyone struggling to understand the mindset behind people who join ISIS, become suicide bombers, massacre innocents - committing what he calls "altruistic evil" or evil deeds in the name of some higher power or ideal.

When there's a huge queue in the hospital waiting room and everyone's been sitting about for hours I'm looking for people to blame - the rude receptionist, the hospital bureaucrats, or the ridiculously wealthy people living in our land who think that paying tax for public services is for the little people.That's the narrative I subscribe to. I don't feel annoyed with the person with darker skin and a foreign accent ahead of me in the queue and think I should have a greater entitlement. But I can see why people would, when that's the narrative they subscribe to. I'm just as likely as the next person to find someone to blame - although this tends to be the powerful rather than the powerless in my case.

There's a lot being said online these days about the paradox that we are living in a world where we can all have a platform if we have a mobile phone and are literate - all possible angles on every topic are recorded each second on the Internet - and yet we are increasingly only hearing what we want to hear. In a huge cacophony of clamouring voices the technology we use, without us really noticing it, is segmenting us more and more narrowly. 


But when we stop listening to people we disagree with, and speaking up when we should, we marginalise ourselves and end up bleating pointlessly within our own group. It doesn't help that public servants are often prevented from presenting counter-views and the evidence before our eyes in order to remain impartial - but the most worrying thing for me personally is how disengaged from it all I am feeling at the moment. When I stop listening to other views, and when I stop standing up against prejudice, when I retreat into my group and pull down the shutters, that's when "worrying" turns into "dangerous". When millions of Americans want to vote for a man whose views I think are repugnant it's no good just popping them all into the "enemy" group in my head. As fruitless as it may seem, the only way forward is to try to find points of agreement, to understand the reasons why people think the way they do, and to try to make connections.


Sunday, 24 July 2016

The other side of the boat

The end of spring, and start of summer always makes me feel slightly unsettled. I have hard-wired memories of anxiety over exams, and their results, which pop up every year with the warm weather. Or perhaps memories of moving from a familiar teacher and class, and a predictable weekly schedule, into the unstructured summer holidays and whatever the new academic year will bring. My studying days ended half a lifetime ago, but I still occasionally get those same sensations in the pit of my stomach on a sunny morning.



And now that’s partly because I’m starting to relive it all again through my children. This week Immy left her primary school, where she has been, with the same 1-1 helper by her side, since she was 3 years old. She literally can’t remember a time before she started there. From September everything will be unfamiliar. So far she’s coping with the change with her usual optimism and good humour but there have been some wobbles.




I doubt any of us has avoided feeling a bit unsettled by the pace of political change over the past few weeks. Since May we’ve had a new Government in Wales. Then Brexit, which I think most of us were completely unprepared for. In my place of work almost everything we have been working on for years is affected by our EU membership and is up in the air now with uncertainty about the underpinning of laws and funding. Questions left hanging … shoulders shrugged …



And then the dramatic daily changes in Westminster politics. I get a newspaper delivered and I’ve been amazed by how out of date each day’s edition has been when it drops through the door - with the whirlwind of people coming forward, and then stepping down, as leadership candidates and stabbing each other in the back. Add to that the increasing frequency of terrorist attacks. And the racist and anti-foreigner rhetoric making its way into mainstream discourse here and in the US, political instability in countries not very far away and war and mass migration continuing. I’m sure many people, like me, are feeling unsettled by it all. This blog is about equality, and I can’t shake off the feeling that we are moving rapidly further away from that dream…

I was invited to give a short reflection at our church this evening and as a result I have been pondering, for the past few days, on how Jesus’ followers might have felt after he died. The exact ordering and pace of events leading up to his execution isn’t completely clear from the different gospel records, but it clearly was a dramatic, fast-moving, unexpected and frightening time. Many of Jesus’ followers would have been expecting him to lead them to an uprising against the oppression of the Roman occupation. They would have been terrified by how quickly events changed from his triumphant ride into Jerusalem to the shouts of “crucify him”. They were perhaps feeling horribly guilty about abandoning him at his time of need, whilst also feeling disappointed and let down by him. They would have been left with profound uncertainty about what to do next, in fear for their own lives as a result of being his associates, and in deep shock and mourning too - for the leader they had loved, and served, and followed. Nothing would ever be the same again and they didn't know the end of the story at that point. Everything they had believed and expected for the past few years had come crashing down. 

What they did was to quietly return to their earlier lives, probably feeling exhausted and empty - meeting together in secret, setting out on journeys, trying to get on with their day-to-day activities, heading back to their old professions to make ends meet, and trying to pick up the pieces.

What did they need at that point? Some very dramatic display of resurrection power? Flashing lights, earthquakes and voices from heaven?

What follows is nothing like that. We have a series of simple stories in each of the gospel records describing the disciples in their daily lives encountering Jesus but not recognising him. 

One story is about some of the disciples out on the lake trying to catch fish, unsuccessfully, all night, and in the morning seeing someone walking on the shore, who suggested that they should throw their nets to the other side of the boat. At that point the nets suddenly filled with fish and they recognised the speaker to be Jesus. They met him on the shore - he had already made a fire - and ate a simple breakfast of bread and fish with him.



After the fast-paced passion narratives, we have quiet stories like this breakfast on the lakeside, an encounter on a walk to a nearby town, Mary’s early morning visit to the garden. They evoke an atmosphere of calm and stillness. They take place in the peace of early morning and evening.

Afterwards we have the coming of the Holy Spirit with fire at Pentecost, the dramatic conversion of the apostle Paul on the Damascus Road, the persecution of the Christians and the early days of the Church - again fast-paced, exciting, and full of energy. But the disciples needed this interlude, and Jesus recognised this in the way he approached them.They needed to regain their strength.

So, at times of deep uncertainty or loss, perhaps we are most likely to encounter Jesus in the everyday events of our lives, in the people we meet - the gardener, the fellow traveller, the fisherman by a lake. We can ask God to open our eyes, as the disciples’ eyes were opened, to recognise Jesus and to receive blessing from him. To wait and be renewed before it is time, again, to go out and make a difference.



Perhaps we just need to stop struggling with our nets on one side of the boat, fighting to make sense of things and worrying about how we can sort everything out. Instead we can lift our eyes, turn around, follow our master’s words, and find the abundance of life and blessing on the other side of the boat.  







Monday, 21 March 2016

Comparison is the thief of joy

I remember meeting up with some university friends not long after Immy was diagnosed with cerebral palsy. We were walking outdoors in the sunshine pushing our babies, with some of the older children toddling alongside, all chatting cheerfully. I wasn't feeling particularly despondent, and I wasn't jealous of their less-complex experiences of parenthood. I remember saying that I honestly thought it would have been better if Immy had not been born, and being met with a dismissive laugh from one of them, a doctor as it happens, who suggested that perhaps I was depressed and things would seem better in time. She may have been right in her first observation and she was right in the latter.

Over the years since, several mums of newly-diagnosed children have used those same words in conversation with me. "I wish my child had never been born" probably seem like shocking and terrible words. But these mothers are not (and I was not) saying they do not want to care for, or do not deeply value, their child. It's not necessarily a cry for help, or a sign of depression. It's an assessment made, at that point in time, of the balance of expected joys and sorrows ahead. I never react with a laugh or a dismissive comment.

I'd never stopped to think about the extent to which I had valued myself in relation to other people. Competition isn't a bad thing, it drives us to learn, make progress and excel. It leads to amazing sporting and creative achievements that can enrich all of our lives. It can drive innovations that can be a huge benefit to society, it can improve efficiency and service in a business context. I have been competing with, and comparing myself to, other people my whole life - through school, musical contests and sports, to university and then into work. I was reasonably good at it, and quite happy in that context. I'm now watching, with mixed feelings, as my son starts out on that same track in his school where so much of what the children do is treated as a competition.

And if I'm not competing with other people I'm usually to be found competing with myself - I don't need to join a gym class to set myself a workout that leaves me wobbly-kneed and struggling to breathe. Early parenthood can be a competitive experience too, from the ease with which you conceive, or the natural type of birth you "achieve", or the ease with which you can breastfeed. And then follows the all-important milestones that someone else's baby might be reaching before your own, and so it continues.

So for me, when I started out with a newly-diagnosed beautiful daughter whom I loved so much it physically hurt, this competitive environment was pretty much all I knew. I knew right then that she would never win the competitions, and probably this meant that I would stop winning too. This was scary as I really didn't know any other sort of world. I didn't see how either of us could possibly be happy.

It was only over time that I realised there is another world out there with different types of people in it, who are motivated by caring and nurturing, who are not solely interested in having bigger and better possessions and positions than others. Not everyone is obsessed with paying less tax, amassing more wealth or being promoted. There are loads of people who derive huge pleasure from helping others to achieve, and are happy to stand back and let them take the credit. There are many people that simply want to make beautiful things or play beautiful music for people to enjoy, or who want to spend their lives exploring the world or getting out into nature.

And there are armies of "special needs parents" not at the school gate probably, but who you meet and talk to online and at special groups. We are usually trying to offer each other support and a "shoulders down" place to relax and be brutally honest. We listen and share problems, ideas and solutions, and motivate each other to fight the daily battles for the things our children need. We think of the other children almost as our very own, and cry tears of joy when someone else's child makes a breakthrough or gets through a surgery and comes out safely or stronger.

I have, in my hall by the door, a framed copy of some beautiful calligraphy by a friend of mine whose daughter also has cerebral palsy. It is a quotation attributed to Theodore Roosevelt: "Comparison is the thief of joy". It is in the hallway as a check for me. The problem with competition is that any joy in success is short-lived, as the next contest is not far behind - will I be able to maintain my lead?

*available from WindramDesign on Etsy

It would no longer enter my head to wish my daughter did not exist. I see every single day the joy she brings to people around her. She may not win competitions but she wins hearts. She is happy now, most of the time, and I see no reason why that should ever change, as long as her health and funds allow her to get out and about and be her loving and caring self.

Friday, 18 March 2016

Clutching at straws

When I started this blog I felt optimistic about the title I chose. I felt energised and able to contribute in a small way to improving dignity and life chances not only for my daughter but also for other children with disabilities. After all, a huge amount has been achieved in recent decades by and for people who have an uphill struggle just to get on the starting blocks in the great competition of life. It's only a generation since disabled children were routinely taken from their families and kept in residential institutions, and on another, but related, subject it's not long since we were fighting one another in Europe. We kid ourselves if we think we can never go back to those days.

It really all comes down to the language we use to describe people. When we use words like vulnerable and disabled we are minded to be caring, perhaps because deep down we know that this might one day be us or somebody we love. When words like claimant, welfare spend, scrounger, fraud are used a lot we feel resentful and can distance ourselves, thinking only of the impact on the taxes we pay as a result of this supposed waste of our hard-earned money. On a more severe scale, attrocities such as the holocaust and apartheid (we've looked at the history of these in Lent talks at our church) were supported by large numbers of otherwise caring people because they were able to think of other groups as wicked and dangerous.

Right now the word equality feels like it's gone out of fashion. It's feels a bit passé and slightly embarrassing to be banging on this old drum. We've done with that now and moved on, haven't we?

This week I've been out and about as usual with friends, colleagues and other parents and have done my best to hide the cracks in my smiling mask. I feel like I should re-label my blog "clutching at straws" because there seems to be no cause for optimism in the public discourse.


And yet, the sun is starting to shine, the flower buds are forming, nests are being built once again, and Easter with its profound message of new life and hope in the face of apparent failure is almost upon us. I must look away from public rhetoric and look instead for the beauty in each day, I must steer my thoughts to the abundant generosity and kindness of family, friends, staff and volunteers that support us week by week.



And it is up to me to carry on working to make sure our beautiful girl is as physically strong, emotionally intelligent, academically able and self-confident as she can possibly be to tackle the challenges and set-backs that life will throw at her. I want her to realise her ambitions to offer care and support to others. Indeed I want exactly the same things for my son, who has been lucky enough to be given a head start right now, but who knows what tomorrow will bring?  And actually I want the same for all of the other beautiful and disabled children and young adults, full of potential and patience, that I have the privilege to know.

So please bear with me for the moment until I get the energy and motivation back to continue with the fight.



Friday, 15 January 2016

Fearfully and wonderfully

Sometimes the same words just keep cropping up, and each time they reappear they arrest me more suddenly in my tracks. Just recently it's been the words of Psalm 139, which starts "O Lord, you have searched me and known me". A friend and charismatic member of our community lost her battle with cancer just before Christmas. A group of us met together the night before the funeral and were asked to bring prayers, readings or thoughts to share, and I read this psalm which had also come to my mind a few months earlier when we had been praying for our friend as she went through treatment.

The very next day I heard the psalm again, at the funeral service - which was a powerful and deeply moving celebration of our friend's life and faith, as well as a heartfelt expression of loss.

And then yesterday a Facebook friend posted a beautiful and powerful Vimeo reading of sections of the psalm by adults and children with disabilities. You'll have to click on the link below to see it.

I am fearfully and wonderfully made


The exquisite poetry of this psalm really gets to the essence of what I believe and care about, and my passion for equality. It allows for my doubts and questions, for my weaknesses and confusions. While it doesn't answer my unanswerable questions about tragedy and on-going suffering, it does allow me to ask them within a safe place. I visualise this as the enormous cupped hands of God - the "everlasting arms". And there are other metaphors in the biblical scriptures, such as the place beneath the wings of a mother hen.

The great thing about hearing these words read at a funeral, and by people with disabilities, is that they describe all of us, at all stages of life. It is not our business to categorise people as more or less wonderful depending on their status, wealth, sexuality, ability, race, religion. We are all fearfully and wonderfully made, intimately understood and deeply valuable. It is upsetting that church institutions so often fail to take this on board.

Here are my two wonderfully-made children. They amaze me every day with what they can do, the things they grasp and the pleasure they bring to those around them.

I've reproduced the psalm in full below, including a section towards the end which is far less palatable to our culture - about killing enemies and hating people. Readings of this psalm in church often stop before this section, or skip it and move on to the nice couple of verses at the end. And yet, it is also part of the human condition to wish harm on those that harm us, to dwell on our resentments. This is especially true when we are under threat or are facing emotional, dangerous and difficult times. The writer of this psalm was honest in a way that we are often not honest - it is easy for us to think that this sort of sentiment is the preserve of militant islamists or small-minded racists.

The words of this psalm describe the details of our lives, every cell of our body, every day that we live, every word that we say (kind or vindictive) as being important and known. It's a wake-up for anyone who thinks he, or his club, has a monopoly on truth. It is challenging to anyone who is complacent about her faults. It is a boost to anyone who thinks he is insignificant and unimportant. It is reassuring to anyone who is suffering.

O Lord, you have searched me and known me.
You know when I sit down and when I rise up;
you discern my thoughts from far away.
You search out my path and my lying down,
and are acquainted with all my ways.
Even before a word is on my tongue,
O Lord, you know if completely.
You hem me in, behind and before,
and lay your hand upon me.
Such knowledge is too wonderful for me;
it is so high that I cannot attain it.

Where can I go from your spirit?
Or where can I flee from your presence?
If I ascend to heaven, you are there.
If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast.
If I say, "Surely the darkness shall cover me,
and the light around me become night,"
even the darkness is not dark to you,
the night is as bright as the day,
for darkness is as light to you.

For it was you who formed my inward parts;
you knit me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
that I know very well.

My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes beheld my unformed substance.
In your book were written
all the days that were formed for me,
when none of them as yet existed.
How weighty to me are your thoughts, O God!
How vast is the sum of them!
I try to count them - they are more than the sand;
I come to the end - I am still with you.

O that you would kill the wicked, O God,
and that the bloodthirsty would depart from me - 
those who speak of you maliciously,
and lift themselves up against you for evil!
Do I not hate those who hate you, O Lord?
And do I not loathe those who rise up against you?
I hate them with perfect hatred;
I count them my enemies.
Search me, O God, and know my heart;
test me and know my thoughts.
See if there is any wicked way in me,
and lead me in the way everlasting.











Monday, 28 September 2015

Swimming upstream

I'm the sort of person that wants to DO something about big problems. It's time that all schools were accessible and welcoming to pupils with disabilities. It's time that suitable transport was provided as a matter of course to get children who use wheelchairs to school and on trips. It's time that the NHS started investing in therapy, surgeries and equipment that make a huge difference to the long-term prospects of children with cerebral palsy. Faced with these problems that have a huge impact on a relatively small number of families I'm not prepared to simply grumble and sympathise - I want to solve the problems - all of them and right away!

The trouble is, nobody else is all that bothered. Politicians are interested in campaigns that affect lots of people and improve their chances of getting elected next time around. Managers in the NHS, education and councils are faced with massive budget pressures so need to focus their limited attention and funds on things that will affect lots of people, or people who will make the biggest fuss - or things that are likely to play out in the media.

So while I'm still "dreaming equality", in the light of day I'm actually swimming upstream, unsuccessfully, against a flow that is stronger than me and dragging me downriver. It's wearing me out and I feel like I'm getting nowhere.


I was on a course recently and the trainer was talking about problems that are sometimes described as "wicked issues". They feature a lot in public sector work. No matter how much money we throw at tackling obesity or mental health problems or addiction we're not going to eradicate them. We're not close to abolishing poverty or inequality. While you might be able to tackle them in one direction, something unforeseen might crop up and cause them to get worse again.

Working with Imogen on her training feels like this sometimes. Try as hard as we like she's not going to be an olympic sprinter. She is growing quickly at the moment, and the heavier she gets the harder it is for her weak muscles to move her around - so she needs to get even stronger just to remain as mobile as she is now.  It feels like we're working very hard just to stay still, but she is retaining her mobility and flexibility and we keep working at it. We've no idea what she will achieve eventually, we just keep on working.



We can't give up on these "wicked issues" or the problems will become more severe. We have to keep plugging away at the challenges and thinking of inventive ways to make more of an impact with our limited resources. As it happens I don't think making schools accessible is a wicked issue at all, it's just an expensive and inconvenient one. But achieving disability equality is.

That is because humans have a natural instinct to stick together with people who are most like them, and distrust outsiders. We also have an innate respect for the bigger, smarter, and more beautiful people. We're also hard-wired to look out for ourselves and our immediate families first of all. And yet we also have instincts of curiosity and kindness which compete with these others. Because of this tension, and because of the extra costs involved, we're never going to reach the world where people with disabilities are treated to an unqualified and arms-wide welcome in our schools, our health service and in our society. However, also because of this tension, it's always worth trying.


All I can realistically do is to chip away at the problems I see around, and try not to lose sight of the little evidences of progress around me. Even though there is still no grand plan to make all of Wales's high schools accessible, and no sign that anyone wants to change the law which exempts school buildings from the reasonable adjustments duty, a lot more schools are accessible than when I started my research. In fact the high school we are considering for Imogen would not have been an option three years ago. And while SDR is still not funded routinely on the NHS, some SDR surgeries have been funded - so those families have been spared the challenge of raising thousands. There is still a long way to go, but we've made a start.

I'm reminded of the words of Jesus "the poor you will have with you always". Taken in context this is Jesus welcoming an act of devotion from a worshipper who is being criticised by the onlookers.  It is not an excuse to ignore the needs of poor people, but an acknowledgement that tackling poverty is a continual challenge in which we should all be engaged.

And just when I'm feeling especially discouraged, something happens that reminds me what can be done when a group of people are inspired by a difficult situation to acts of extreme generosity. We saw that in spades when we were fundraising to take Immy to America. We've seen it recently in the generous public response to the plight of refugees fleeing Syria. Most recently I've seen it in the hard work of some local mums and others to open a pop-up cafe just along from Immy's school, inspired by the vision of a friend and community member who is fighting cancer.

'It is not your responsibility to finish the work of perfecting the world, but you are not free to desist from it either." 
(from the Jewish Mishnah)