tag:blogger.com,1999:blog-50361712946514816692024-03-13T04:36:37.182-07:00Dreaming EqualityA positive spin on campaigning to dismantle the barriers faced by children with disabilities and their families. Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-5036171294651481669.post-24509428735787957502020-03-26T03:05:00.002-07:002020-03-26T13:14:25.159-07:00When push comes to shoveAn NHS poster shared on social media this week has chilled me, and many other people like me, who have a disability or care for someone with a disability. It describes the “clinical frailty scale” that is to be used by NHS doctors in prioritising life-saving treatment for critically ill patients with Covid19. The images show elderly people, but the descriptors also fit many young people who are dependent on others for everyday tasks and care. As awful as it is to contemplate, some mechanism is likely to be needed to decide who should receive life-saving treatment. NHS resources are always rationed and decisions to treat or not treat are always based on cost, likelihood of recovery and expected quality and length of life afterwards, but it feels especially stark at the moment when people who would otherwise make a full recovery and live well may die due to overwhelmed critical care services. It must be unbearably difficult for any doctor to have to make such a decision.<br />
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My daughter would fall somewhere between 7 and 8 in the image. The NHS has since clarified (in the small print) that the classification shouldn’t be used for people with cerebral palsy and learning difficulties, but that’s not especially reassuring. Over the years we’ve met a few doctors who appear to believe that quality of life is simply a function of independence and physical and mental capacity, and I’d not want one of these to be making a critical choice about my daughter.<br />
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It was reassuring to see the collective intake of breath and disbelief at our Government’s initial response to this crisis - that we just had to accept the situation, lose some of our vulnerable friends and family members and sit it out till most of us develop immunity. Many of us look around and can see that the risk categories include ourselves or those whom we value deeply and are not prepared to sacrifice on the altar of our economy. Lots of us had taken measures to protect ourselves and our loved ones well before being instructed to do so. </div>
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But in this poster, and the threat of this virus to all of us who generally feel secure and invulnerable, we’re faced with several uncomfortable truths. </div>
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1. Despite laws, policies and school lessons about equality, we are not all perceived as equal, or treated as equal in reality. </div>
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2. Many of our fellow citizens will push and shove to get what they need without thinking of others, and we are all tempted to do this if we’re honest. If we’re not, then perhaps this is because we are fortunate enough not to need to.</div>
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3. At some point in our lives we will find ourselves in the “less valuable” category, if we’re not there already. </div>
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4. We’re not self-determining and all-powerful individuals. We are deeply dependent on one another, and highly vulnerable to the powers and threats of nature. </div>
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5. Nations are a human invention based on geography and shared history. Practically we can’t “go it alone”, and we don’t have the best technology and ingenuity to withstand all crises. We ought to work with our brothers and sisters all over the world and really listen and learn from others with valuable experience and knowledge to share. Great Britain isn’t feeling quite so great just now. </div>
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We are also learning some happier lessons about the value of human contact, and how to connect with one another in different ways. We’re appreciating the beauty of the world around us and noticing things that some of us usually rush frantically past. We’re being creative and working together with patience to find solutions to new problems. We‘re learning vital lessons that need to imprint deep within us, and inform how we conduct our lives when this is all over.</div>
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It would be particularly good if we could all remember what it feels like to be vulnerable. </div>
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-60780448588969481012018-07-08T05:21:00.001-07:002018-07-08T05:49:28.671-07:00A golden thread<div class="MsoNormal" style="font-family: Cambria; margin: 0cm 0cm 0.0001pt 7.1pt;">
<span style="font-family: "helvetica";">On Wednesday I attended a wonderful service in Llandaff Cathedral marking 70 years since the founding of the NHS. We should definitely celebrate our NHS! The passion and dedication of doctors and healthcare workers helps give <i>better </i>outcomes for <i>more </i>people at a <i>lower</i>cost than in many similar countries. Along with medical advances, this has helped our average life expectancy go up by about 15 years since the NHS was founded.<br /><br />But are these technological advances always positive? There is a moral dimension to healthcare, and choices that have to be made. Should we focus on treating those who are sick or injured? Should we spend more on prevention, or on therapies for long-term conditions? There are also ethical choices around end of life, and start of life.<br /><br />I was with some friends one evening recently. For some reason we got onto talking about the new screening test that has been introduced to the NHS in Wales. It’s called NIPT - non-invasive pre-natal testing. It’s an early genetic screening for certain genetic differences including Down’s Syndrome, from a blood test, instead of the invasive amniocentesis which can increase the risk of miscarriage.<br /><br />Wales is the first part of the UK where this test has been made available on the NHS, just a few weeks ago. It was introduced in Iceland in the early 2000s and is taken in 85% of the pregnancies where it is offered. The vast majority of those who receive a positive result choose to terminate, meaning that only one or two babies with Down’s Syndrome are born in Iceland each year. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">I know loads of wonderful children and young adults who have Down’s Syndrome, including several of Immy’s best friends at school. Although their families have lots of extra challenges to deal with, they are each valued and loved, and just as full of life, love and potential as any other child I know.<br /><br />As I said, I was with some friends talking about this and I asked the question: ‘’if so many of us choose to terminate a pregnancy when we discover the embryo has a genetic abnormality, are we in fact saying we value people with disabilities less?” One person was honest and said, “yes, I suppose we do”. We subscribe in principle to the idea of equal rights for disabled people, but not if it’s going to cost us personally. We are horrified by the stories of shocking treatment of disabled adults hidden in our society today, but are we prepared to pool more of our resources to make sure people are safe? We are sickened by the eugenic purges of the fascists – the cruelty and human suffering are unbearable to think about. But surely the end result to our society of selective terminations is similar. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">Time and again I hear stories of expectant parents and those whose child receives a diagnosis being confronted only with the potential problems they are likely to encounter. It’s odd really as we all meet problems in our lives, but nobody pointed this out when my son was born without any obvious difficulties. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">What goes through your head when you receive a diagnosis of a long-term condition? I can tell you some of what went through my head when I learned that Immy had cerebral palsy: How am I going to cope with no extended family around? Will my precious baby girl make friends and ever be independent? Will she be happy? What happens when I’m not around anymore? How will other people treat us? I’m certainly not going to judge someone for the choices they make, based on the information in front of them and the way it’s presented, as well as very legitimate worries about the future.</span><br />
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<span style="font-family: "helvetica";">I was shocked but also grateful for the honesty of my friend. In fact I recognise powerful competing instincts inside myself. On the one hand I have a deep-rooted, instinctive fear of anyone who looks very different, and acts alarmingly or threateningly. At the less extreme end this instinct makes me want to hang out with people that are similar to me – I feel comfortable and at ease. But I also have instincts that make me want to put myself out and help those that are suffering. We shouldn’t be surprised by this – the same tensions are everywhere in the natural world around us.</span></div>
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<span style="font-family: "helvetica";"><br />That tension also runs through the diverse texts that make up our Bible - the Hebrew Scriptures and Greek New Testament. I’m not a biblical scholar but I have read the Bible many times, and I find two threads running through. The first is the narrative of the chosen people, those who are called into the special favour of God, and contrasted with the wickedness in the world around them, which has to be smashed and rooted out. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">I’m often puzzled about how as churches we split and fragment around doctrine and practice, in stark contrast to Jesus’s command to be One. I’m puzzled by how as Christians we can justify turning our noses up and our backs around on others in need and letting our personal interests take centre stage. Perhaps it’s because we focus too much on this narrative thread. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">But there’s another golden thread that runs right through the scriptures - that God judges his people on how they treat their most vulnerable. We read it time and again through the stories of the Old Testament, and in the writings of the prophets. And nowhere is this more evident than in the teachings and practical actions of Jesus himself. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">The story of the banquet reminds us that God chooses those who are weak, those with disabilities, those cast aside by others, to join him in the best seats at the top of the table in his upside-down kingdom. We read that it was by bringing himself low through suffering that Jesus was raised to the highest place.<o:p></o:p></span></div>
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<span style="font-family: "helvetica";">And actually I think these two threads twist together in this way - Yes, I am chosen, precious and called - but I am called to be different, to be the stinging and healing salt in the wounds of the world, the bright light shining into the dark corners of hypocrisy, greed, fear and laziness. I am called to love, as I am loved. A unique feature of our Christian faith is the central principle that we do not earn God’s favour through our efforts. Instead we act in sacrificial love as a response to the favour shown to us. This is grace - the free gift of God’s love. We don’t earn it, nor do we deserve a healthy, prosperous, easy life. For those of us to whom a lot has been given, a lot is expected. As humans we have a tendency to pull the ladder up behind us, forgetting how much sacrifice has gone into bringing us safely to this point. “Remember you were slaves and strangers in Egypt” God says repeatedly to the Israelites. “Freely you have received. Freely give” said Jesus. <o:p></o:p></span></div>
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<span style="font-family: "helvetica";">So I’m saddened that we can now easily identify people with genetic differences before they are born. Partly because it worries me where this might eventually lead and who else we might try to eliminate, but mainly because a world without people with genetic differences and disabilities is a colourless, competitive one in which we blunt our instincts to pool our resources and care. It’s a sad world for all of us. Instead I think we should be offering more reassurance and long-term support to ensure that all families are able to thrive.</span></div>
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<span style="font-family: "helvetica"; font-size: 12pt;">I am called, not to walk by on the other side of the road when I see someone suffering because I can think of a hundred good reasons not to stop and help. I am called to put myself out in the service of others. I am called to consciously over-ride my instinct to distrust those that are different, and to strengthen - through exercise - my instinct to care. So help me God.</span></div>
Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-56179993378606368302017-04-10T13:18:00.003-07:002017-04-10T13:26:45.403-07:00Reflection for Holy Week<div class="MsoNormal">
<span style="font-size: 14.0pt;"><span style="font-family: inherit;">I was really
struck by something I caught in the middle of the Beyond Belief programme on
Radio 4 a couple of weeks ago. The
discussion was about the pitfalls of moving beyond inter-faith dialogue, which
most people think is a good thing, towards inter-faith worship, which can cause
offence at the very least. One comment really grabbed my attention and I’ve
been thinking about it since. Apparently Muslims and Jews can worship in both
mosques and synagogues, but they struggle to worship in a church. This is because of the iconography - in
particular the images of Christ on the cross – of God suffering. To Jews and Muslims this is offensive, even
blasphemous. </span><span style="font-family: "calibri"; font-size: 14pt;"><o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: 14.0pt;">And yet this
is absolutely central to the Christian faith, and it is the focus of this week as we
begin our journey with Christ towards Jerusalem and to His crucifixion.<span style="mso-spacerun: yes;"> </span>The crosses we see around our churches focus
our attention on the most mind-blowing doctrine of all - that the Almighty God,
creator and sustainer of the universe, stepped into his creation and suffered
alongside his creatures. <o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14.0pt;"><b>Immortal God</b></span><span style="font-size: 14.0pt;"> – trapped in time inside the body of a
defenceless and needy infant, growing and ageing with limited knowledge of past
and future.<o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: 14.0pt;"><b>Immortal God</b></span><span style="font-size: 14.0pt;"><span style="font-family: inherit;"> – who understands my fears for the future,
and my frustration with how slowly things change.</span><span style="font-family: "calibri"; font-size: 14pt;"><o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14.0pt;"><b>All-knowing God</b></span><span style="font-size: 14.0pt;"> – restricted within the small brain of a newborn baby, learning to identify sounds, shapes and colours, to make sense of
a mother’s face. Bound inside a human mind and the experience of human senses. <o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14.0pt;"><b>All-knowing God</b></span><span style="font-size: 14.0pt;"> – who understands the limits of my
understanding, and my daughter with her learning disabilities, and my friends
with dementia.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14.0pt;"><b>Father God</b></span><span style="font-size: 14.0pt;"> – whose birth includes questions about parentage, embroiled in a
dispute between his brothers, worrying about his mother’s welfare as he reached
his final days. <o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14.0pt;"><b>Father God</b></span><span style="font-size: 14.0pt;"> - who understands the challenges as well as the joys of my family
life.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>All-powerful
God</b></span><span style="font-size: 14pt;">
– who rejected the temptation to demonstrate His power. Who chose to be a
servant, to wash the smelly, dusty feet of his followers.<o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: 14pt;"><b>All-powerful
God</b></span><span style="font-size: 14pt;"><span style="font-family: inherit;">
– who understands me when I feel powerless, when I am angry at the hypocrisy,
the greed and self-interest that seems to motivate so many. Who teaches me to
be a servant too.</span><span style="font-family: "calibri"; font-size: 14pt;"><o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>Creator of
the Universe</b></span><span style="font-size: 14pt;"> – learning to be a carpenter, starting with the basics,
in a humble family – patiently learning and growing.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>Creator of
the Universe</b></span><span style="font-size: 14pt;"> – for whom no humble task that I do is meaningless.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>God of
Heaven</b></span><span style="font-size: 14pt;"><b>
</b>– born into poverty around farm animals, to parents soon to flee as refugees.
Choosing to live a wandering life with no home to go to.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;"><b>God of
Heaven</b></span><span style="font-size: 14pt;"><span style="font-family: inherit;">
– who knows what it is to be homeless and poor, and to rely on the generosity
of others.</span><span style="font-family: "calibri"; font-size: 14pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-iA79v3oi6Ng/WOvoAkAMl_I/AAAAAAAAAwU/r7iizWT79dYBfIZSEvkaPwq4JO2NdjdpgCLcB/s1600/_87276203_refugees.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black;"><img border="0" height="180" src="https://4.bp.blogspot.com/-iA79v3oi6Ng/WOvoAkAMl_I/AAAAAAAAAwU/r7iizWT79dYBfIZSEvkaPwq4JO2NdjdpgCLcB/s320/_87276203_refugees.jpg" width="320" /></span></a></div>
<div class="MsoNormal">
<span style="font-family: "calibri"; font-size: 14pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>God of Glory</b></span><span style="font-size: 14pt;"> – who opted
to hang out with outcasts, with rejects, people with infections and mental
illness. With people who knew they had messed up.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>God of Glory</b></span><span style="font-size: 14pt;"> – who reaches
out to touch me when I feel side-lined and alone, who reaches for me in my mess
and in my shame.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: 14pt;"><b>God of life</b></span><span style="font-size: 14pt;"> - weeping
over the death of a friend. Willingly handing himself over to his betrayer and
his accusers. Silently taking the thrashing, and the taunting, the intense
pain, and finally suffering a slow agonising death.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;"><b>God of life</b></span><span style="font-size: 14pt;"><span style="font-family: inherit;"> – who knows
my loss, who knows my grief, who knows my pain and weakness, who knows my
rejection. Who knows my death.</span><span style="font-family: "calibri"; font-size: 14pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-evK6gye7I7k/WOvoRVtUO7I/AAAAAAAAAwY/T4tD0GdbIawPn2xQPQmttbGOt_wsJ3b0QCLcB/s1600/Gravestones_at_Byrd_Leibhart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-evK6gye7I7k/WOvoRVtUO7I/AAAAAAAAAwY/T4tD0GdbIawPn2xQPQmttbGOt_wsJ3b0QCLcB/s320/Gravestones_at_Byrd_Leibhart.jpg" width="320" /></a></div>
<br />
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;">When I’m struggling with the latest challenge associated
with bringing up a child with a disability I don’t always want to hear from the
professional or the other parent who has all the answers.<span style="mso-spacerun: yes;"> </span>I’m not especially energised by those who
find everything easy – although I’m pleased that they do. What really helps me
is when I know I’m not alone – when I go onto Facebook and share my problem and
get responses saying “yes, we
struggle with that too”. When I meet up for coffee with another parent in a
similar position and we both know we don’t have to pretend. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;">Healing is found just
as much through shared experiences like these as through solving the problems.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: inherit; font-size: 14pt;">“For we do not
have a high priest who is unable to sympathise with our weaknesses, but we have
one who was tempted in every way that we are, yet was without sin. Let us then
approach the throne of grace with confidence, so that we may receive mercy and
find grace to help us in our time of need.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14pt;">But God empathising with me isn’t the whole story. It’s not sufficient that God shares in my
suffering. I also need to be redeemed – I don’t mean redeemed in its original
context of</span><span style="font-size: 14.0pt;"><span style="font-family: inherit;"> slavery – someone has paid a
cash price to buy my freedom - but in the <span style="font-family: inherit;">sense of redeeming a situation. Bringing
hope out of hopelessness, forgiveness for an unforgiveable action, peace to a
troubled mind, and new life out of death.</span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: 14.0pt;">“by his
wounds we are healed”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
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<div class="MsoNormal">
<span style="font-size: 14.0pt;"><span style="font-family: inherit;">“by his
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-51800619960925003532017-04-03T02:03:00.000-07:002017-04-03T22:50:23.648-07:00HungerI found it very difficult to watch last Monday's special Question Time about Brexit. The programme was recorded in the West Midlands where historical tensions about race and immigration seem to be increasingly bubbling to the surface. The politicians and media figures on the panel claimed there was a general consensus that immigration is good, but uncontrolled immigration is bad; that immigration is good if it involves people who are skilled, will work hard and contribute and fill in gaps in our public services (never mind the impact this has on skills in their home countries) but it is bad if the immigrants need healthcare or support. Many people, but by no means all, think we should provide a safe haven for those fleeing danger and persecution. However, the burden of proof is expensive, and can be really traumatic for those who are often already deeply traumatised.<br />
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But what about unskilled economic migrants; those, often young people, who risk their lives in precarious journeys over land and sea for the promise of work and prosperity in the West? That's when the rhetoric changes and compassion disappears: "we're a small island and we're full", "we should look after our own first" and "our schools and hospitals can't cope". It's as if migrants are solely to blame for these pressures, and it has nothing to do with the Government's choices on tax and spending over the years since the economic crash.<br />
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Clearly we couldn't accommodate everyone who is living in poverty in the world. We can't even help a fraction of the refugees; there are now more than five million refugees from Syria alone in neighbouring countries. Five million! That's the population of Scotland! And we can't even get our act together to take a few hundred unaccompanied child refugees. Clearly we should be doing much, much more. The short and long term answer is obviously to work for peace and economic prosperity so that the majority of people can, and want to, remain in the lands where their families are rooted.<br />
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Over five days last week I took on a personal challenge, which I thought would be difficult. It was a lot harder than I had expected. It was called the Mean Bean Challenge, organised by the development charity Tear Fund. I had to consume only water, plain porridge for breakfast and then plain, unflavoured rice and plain beans for lunch and supper. My children also opted to do this for one day. I'm forever saying to them, "eat your supper and stop complaining! There are many children in the world who would love to eat that". And they look at me doubtfully, that is if they've registered my words as more than a background hum. To be fair, this might also be a lot to do with my cooking skills.<br />
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It's one thing knowing that so many people have so little to eat and that what they eat every day is insufficient, monotonous, and not nutritious. It was another thing altogether experiencing it myself. After a couple of days I felt bloated and weak, I had a horrible taste in my mouth - by three days I was constantly thinking about food and on the final morning I woke up having just dreamt about delicious food being held out of reach. And when I broke my fast on Saturday morning everything tasted so vibrant, almost unbearably sweet. It is easier for me to understand now how hunger drives people to decide it is less risky to get on an over-crowded boat or stow away in a lorry for the promise of food security and a decent standard of living.<br />
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I went to South West Uganda twenty years ago to visit a friend who was spending her gap year there volunteering in a village school. Every day the children had the exact same meal of sorghum porridge and rehydrated beans. I tried this on just one day and it was a struggle to swallow. Recently some other friends returned from a visit to another part of Uganda and, again, there were photos of school cooks sifting beans to make the daily meal of maize porridge and beans for the children. Twenty years on, in one of the most fertile parts of our planet, and still the same grinding poverty! The money we all raised through our Mean Bean Challenge will fund resources and education to help many small communities to use more sustainable farming methods.<br />
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But why are these problems so intractable? Why, when there are multiple crops of delicious fruit and vegetables growing in the fields, are people only eating maize and beans every day even when the rains come? Why, when overall these African countries become more prosperous, does prosperity concentrate in the cities and with those who are already much more wealthy? Corruption has always been part of the answer, but it's not the whole story.<br />
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Our Government hands over millions each year in aid and many of us give to development charities. But we also expect to walk into the vegetable aisle and buy all possible varieties of fruit and vegetables out of season. We compare prices and quality between different shops and opt for the cheapest. Supermarkets generally compete on quality and price, but have always paid less attention to the way workers are treated in the supply chains. We throw so much food away as a society, and our homes are full of things we don't need.<br />
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There is only so much we can do as individual consumers, and it's easy to hide behind a feeling that it's all inevitable. I'm just as likely as anyone to think "what difference will me buying this one cheap item of clothing make? It's a crazy bargain after all". But of course, while each of us is telling ourselves this, the exploitation continues.<br />
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These are some of the things I can do: I can choose Fair Trade; I can check out the ethical credentials of my favourite clothes shops and send emails asking to see their policies; I can use one of the ethical shopping websites - googling "ethical shopping UK" brings up loads of links.<br />
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As we start the process of leaving the EU and the exciting new world of separate trade deals with the rest of the world perhaps I should get in touch with the politicians that represent me and remind them that we want fair trade not just the most lucrative "best" deals for UK. Our Prime Minister was responsible for passing of the Modern Slavery Act in 2015 and often talks about the scourge of slavery in the world. This, and our shared responsibility to reduce poverty and global inequality, needs to be ringing loud and clear in all of our country's trade negotiations.<br />
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And after my bean challenge I will find it easier to remember that crossing the world in search of plentiful food and security is a perfectly rational and admirable human response to global inequality, not a crime.<br />
<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-88226030712191246312017-01-27T12:04:00.001-08:002017-01-29T08:12:58.663-08:00I choose.... not to judgeI 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.<br />
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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.<br />
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I am also quite sickened by pictures of women with placards claiming that abortion is just about their bodies and their rights.<br />
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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.<br />
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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...<br />
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... then maybe there'd be fewer abortions and more life.<br />
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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?<br />
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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?<br />
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I am pro life<br />
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I am pro equality - the equal value of every human<br />
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I am pro caring for people who are struggling<br />
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I am not anti abortion in all circumstances<br />
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I am anti judgingSue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-4514420379665832532016-09-24T14:02:00.000-07:002016-09-24T14:30:34.317-07:00Down with Mr Fox!!<span style="font-family: inherit;">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.</span><br />
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<span style="font-family: inherit;"><span style="line-height: normal;">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! </span><span style="line-height: normal;">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.</span></span></div>
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<span style="font-family: inherit; line-height: normal;">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.</span><br />
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<span style="font-family: inherit; line-height: normal;">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.</span><br />
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<span style="font-family: inherit;"><span style="line-height: normal;">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, </span><span style="line-height: normal;">when that's the narrative they subscribe to. </span><span style="line-height: normal;">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.</span></span><br />
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<span style="font-family: inherit; line-height: normal;">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. </span></div>
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<span style="font-family: inherit; line-height: normal;">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.</span></div>
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-20047414594311633252016-07-24T13:35:00.001-07:002016-07-25T14:32:37.468-07:00The other side of the boat<div style="font-family: 'Gill Sans MT'; font-size: 16px; line-height: normal;">
<span style="letter-spacing: 0.0px;">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.</span></div>
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<span style="letter-spacing: 0.0px;">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.</span><br />
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<span style="letter-spacing: 0.0px;">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 …</span></div>
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<span style="letter-spacing: 0.0px;">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…</span></div>
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<span style="letter-spacing: 0.0px;">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. </span></div>
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<span style="letter-spacing: 0.0px;">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</span> old professions to<span style="letter-spacing: 0px;"> make ends meet, and trying to pick up the pieces.</span></div>
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<span style="letter-spacing: 0.0px;">What did they need at that point? Some very dramatic display of resurrection power? Flashing lights, earthquakes and voices from heaven?</span></div>
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<span style="letter-spacing: 0.0px;">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. </span></div>
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<span style="letter-spacing: 0.0px;">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.</span></div>
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<span style="letter-spacing: 0.0px;">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.</span></div>
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<span style="letter-spacing: 0.0px;">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.</span></div>
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<span style="letter-spacing: 0.0px;">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.</span></div>
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<span style="letter-spacing: 0.0px;">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. </span></div>
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-20763718126214342622016-03-21T14:46:00.000-07:002016-04-11T11:52:12.216-07:00Comparison is the thief of joyI 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.<br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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? <br />
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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.Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-41024580057095594372016-03-18T05:33:00.000-07:002016-03-22T12:29:43.514-07:00Clutching at strawsWhen 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.<br />
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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.<br />
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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?<br />
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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.<br />
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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.<br />
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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.<br />
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So please bear with me for the moment until I get the energy and motivation back to continue with the fight.<br />
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<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-39883998620277934662016-01-15T05:13:00.001-08:002016-01-16T13:18:13.720-08:00Fearfully and wonderfullySometimes 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.<br />
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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.<br />
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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.<br />
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<a href="https://vimeo.com/86925527" target="_blank">I am fearfully and wonderfully made</a><br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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O Lord, you have searched me and known me.</div>
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You know when I sit down and when I rise up;</div>
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you discern my thoughts from far away.</div>
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You search out my path and my lying down,</div>
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and are acquainted with all my ways.</div>
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Even before a word is on my tongue,</div>
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O Lord, you know if completely.</div>
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You hem me in, behind and before,</div>
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and lay your hand upon me.</div>
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Such knowledge is too wonderful for me;</div>
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it is so high that I cannot attain it.</div>
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Where can I go from your spirit?</div>
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Or where can I flee from your presence?</div>
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If I ascend to heaven, you are there.</div>
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If I take the wings of the morning</div>
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and settle at the farthest limits of the sea,</div>
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even there your hand shall lead me,</div>
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and your right hand shall hold me fast.</div>
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If I say, "Surely the darkness shall cover me,</div>
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and the light around me become night,"</div>
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even the darkness is not dark to you,</div>
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the night is as bright as the day,</div>
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for darkness is as light to you.</div>
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For it was you who formed my inward parts;</div>
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you knit me together in my mother's womb.</div>
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I praise you, for I am fearfully and wonderfully made.</div>
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Wonderful are your works;</div>
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that I know very well.</div>
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My frame was not hidden from you,</div>
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when I was being made in secret,</div>
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intricately woven in the depths of the earth.</div>
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Your eyes beheld my unformed substance.</div>
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In your book were written</div>
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all the days that were formed for me,</div>
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when none of them as yet existed.</div>
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How weighty to me are your thoughts, O God!</div>
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How vast is the sum of them!</div>
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I try to count them - they are more than the sand;</div>
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I come to the end - I am still with you.</div>
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O that you would kill the wicked, O God,</div>
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and that the bloodthirsty would depart from me - </div>
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those who speak of you maliciously,</div>
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and lift themselves up against you for evil!</div>
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Do I not hate those who hate you, O Lord?</div>
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And do I not loathe those who rise up against you?</div>
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I hate them with perfect hatred;</div>
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I count them my enemies.</div>
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Search me, O God, and know my heart;</div>
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test me and know my thoughts.</div>
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See if there is any wicked way in me,</div>
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and lead me in the way everlasting.</div>
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<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-35638637132648352492015-09-28T13:40:00.001-07:002015-09-28T13:54:05.900-07:00Swimming upstreamI'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!<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-78968986944415624602015-07-02T13:59:00.000-07:002015-07-02T13:59:57.771-07:00The mountain ahead - fearsome barrier or exciting challenge?We're in the middle of trying to work out where our daughter should go to high school. The whole process of deciding and preparing feels like a mountain looming ahead, and not a sunlit heather-blanketed alpine one. It feels more like a stern rugged Scottish mountain - reminding me of a visit to the Isle of Skye years ago and the shiver that went through me as we approached the Cuillin mountains in shadow up ahead.<br />
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Since mainstream primary school has gone well we'd not really questioned that mainstream would work for high school too. But reality has been slowly dawning - the reality that high school kids, high school peer pressure, high school learning challenges, high school logistics are a different proposition altogether. Talking to other parents of academically bright children who use wheelchairs who honestly describe the barriers to friendship that a wheelchair can create, and to parents of children with learning needs who have found that mainstream schools have not been able to meet their child's needs, has really made me stop and think. Our lovely girl has both of these challenges to contend with. Having a kind adult alongside you can help attract friends at primary school, but not many teenagers want to be seen hanging around with an adult. It's all about being cool.<br />
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Someone asked me in a meeting what is the most important thing I wanted for Immy as she heads up to high school. The answer came to me immediately and without contest - she needs some really good friends. The friendliness of students and staff has been her number one concern as we've looked at different schools. Her school friends now are very kind but she doesn't quite have the best buddies that I had at the same age. So if that's the case, what school option is most likely to help her make some really close friends? If she's happy she'll learn and achieve. It's been a hard reality to come to terms with, but we feel that Immy needs to learn around children who are more like her if she is to thrive.<br />
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So while I'm dreaming of a world where everyone is equally included and valuable, unfortunately that is on the other side of those grey mountains.<br />
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I am passionate about inclusive education. A very large proportion of the problems we face around the world are due to mistrust, fear and an inability to empathise with other humans. Clustering round people who are similar to us is a human instinct, but it doesn't serve the cause of world peace well, or even national peace or community peace. Our son recently started at a cathedral school rather like the one I went to, as he won a choral scholarship. This is a great opportunity for him and the familiarity is comforting to me. But it also makes me a bit uneasy and determined to ensure that his horizons are not narrowed. If we can't make our schools inclusive then we make the job of promoting tolerance and understanding much more difficult further down the line. I've said this in another blog post, but being taught in ethnically diverse schools in Leicester has had a life-long impact on me - I don't "see" differences in race and religion as starkly as other people do. Children taught alongside others with disabilities will instinctively show greater understanding and respect for people with disabilities throughout their lives. <br />
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But inclusion only works if the resources are available to support it. In busy schools with large classes those who are very different can be very vulnerable. All school buildings should accommodate children who cannot climb stairs - the option should be there, and that is non-negotiable in my view. But it has always been equally clear to me that not every child is best taught in a mainstream classroom. Being equally valuable is not the same as needing equal resources to thrive - in the same way that we use different health resources throughout our lives. Good inclusion practices are expensive and complicated as they centre on each child's individual needs. A really good school values and cares for all of its pupils no matter how strong or weak they are academically, celebrates their successes, teaches all pupils to value and respect those who are different, and embraces as many opportunities as possible to bring everyone together to work alongside one another. This has been our experience with Immy's primary school, with very few exceptions. And it is what we are looking for at secondary level too.<br />
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Is it too much to ask? I hope not.<br />
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Five days ago I managed to walk, with friends old and new, 26 miles around Malvern and Ledbury, including along the ridgeway, with a total ascent over the day of 4800ft (compared with Ben Nevis at 4300ft). We climbed to the highest peak to start and then headed down and tramped through fields, over stiles and along lanes for about 17 miles before approaching the ridgeway again for the final 7 mile stretch with 10 peaks. At that point most of us were already in some discomfort with blisters and sore muscles, but it looked so beautiful ahead that we were spurred on. And we weren't disappointed. I took the picture below as we approached the iron age fort on one of the final summits.<br />
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A "walk" along the Cuillin Ridge on Skye on the other hand involves tackling 11 munros and a total 13,500ft ascent. Given that today was the first in which I could get downstairs comfortably without holding on I think I'll leave that one to the experts!<br />
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<span style="font-size: x-small;">British Camp - Iron age fort on the ridgeway near Malvern</span></div>
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The thing about hill walking is that you can only take one step at a time. You can't see over the next little summit, or round the corner. But then you come across a beautiful butterfly or an amazing view that lifts you, and fortunately we usually walk in the company of friends to encourage us through the tricky bits and give us a hand down a rocky jump.<br />
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I'm so grateful for social media - my Facebook friend list is full of inspiring, and sometimes despairing, parents of disabled children who are tackling the same mountains as we are, one step at a time.<br />
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Best foot forward then!<br />
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-1611323252287960552015-04-26T12:40:00.001-07:002015-04-27T01:29:30.397-07:00To the moon and back<span style="font-family: inherit;">We take it for granted that children with disabilities should be cared for </span>within<span style="font-family: inherit;"> their own families wherever possible with state support, but we forget how recently this was not the norm. I was born in the early 1970s and at that time children who had Down's syndrome and other disabilities were still regularly taken into institutions as soon as they were diagnosed. Institutions were able to provide efficient care, meeting basic needs and sharing specialist resource, but at worst they masked systematic abuse, and a serious inability to meet the emotional needs of vulnerable children, as the work of Maureen Oswin exposed in the 1960s and 1970s. Her publications were instrumental in changing attitudes, and increasingly children with disabilities remained in the care of their parents. </span><br />
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<span style="font-family: inherit;">The fact is that no institution and ve</span>ry<span style="font-family: inherit;"> few temporary carers can compete with </span>the<span style="font-family: inherit;"> fearsome love and dedication that parents of children with disabilities bring to bear in fighting for their child's best interests. I </span>could easily<span style="font-family: inherit;"> fill a book with examples of parents doing incredible things</span><span style="font-family: inherit;"> to give their disabled children the best possible ch</span>ance<span style="font-family: inherit;"> of </span>achieving<span style="font-family: inherit;"> their potential and being confident and happy </span>with themselves. In the face of daily exhaustion, constant criticism, low expectations and demoralising delays and rationing, parents fight on to get what they know their children need. We love them to the moon and back! And as for the parents who have been told "your child will never achieve a, b and c" who go on to prove the professionals wrong - I hear new examples of this every week.<br />
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The Chronically Sick and Disabled Persons Act in 1970 made the provision of welfare to disabled people of all ages a legal right, and until recently you would rarely hear any public questioning of the finances and services provided for people with disabilities. But times are changing. A report by the UK charity Contact a Family, of which I am a trustee, recently reported that 70% of parents of disabled children say they feel that the stigma of claiming benefits for their children has increased in the last two years. And more than 10% say that they have had verbal insults for claiming benefits from friends or family members! <br />
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It is far more expensive to bring up a child with a significant disability. Specialist equipment, like tricycles or car seats, costs around 10 times the "mainstream" alternative and is very often not state-funded. A higher proportion of relationships break up when disabled children are involved, so these higher costs are borne by a single parent. Holding down a job is difficult, with frequent medical appointments and challenges finding other people to care for your child outside of school hours and in the holidays. Most working mothers I know who have disabled children have either given up work, have not progressed in their careers or have started small businesses. Families are, everywhere, struggling to cope.<br />
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I have not seen any figures suggesting that more disabled children are now being given up by their families into state care again, but there are signs that we are moving away from inclusive education. I do not believe for a moment that all children are best taught in mainstream classrooms, but my own quick examination of Wales's education data suggests that the trend, through the previous couple of generations, to educate more children with disabilities in mainstream schools seems to be going into reverse now. Special schools are growing and, in South Wales at least, are being moved onto sites next to one another for efficiency reasons - and fewer children are being taught in special units attached to mainstream schools. These figures could be partly a result of more children surviving with more complex needs, but I don't think that is the whole story. <br />
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The title of this blog is Dreaming Equality, but with an election coming up has anyone else noticed the topic of equality being given any airtime at all - whether that be disability or gender, race or religious equality etc? I'm often met with slightly embarrassed looks these days when I talk about disability equality for children in Wales. It's almost like these are old-fashioned ideas. Things seem to have changed quite recently. And they need to change back.<br />
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<span style="line-height: 18px;">I am an idealist. When I hear people, in work or school or on Facebook, complaining that this or that is wrong with the world then my instinct is to think "let's not settle for this - what can we do to put things right?". Once I've decided on a goal, then I'm absolutely determined to achieve it. It's not a very relaxing way to be, nor is it comfortable for the people close to me, and it often doesn't make me very popular. It is just how I am! </span><br />
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<span style="line-height: 18px;">But an idealist is in danger of venerating one virtue over others which sometimes pull in other directions. I love having Facebook friends who hold different religious and political views to me and I value the exchange of ideas, as long as everyone remains polite! The title of my blog is Dreaming Equality and I spend a lot of my time thinking, and feeling passionate, about equality - by which I mean that I believe everyone is:</span><br />
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<span style="line-height: 18px;"><br /></span><span style="line-height: 18px;">To me, equality is not about everyone always receiving equal treatment, in schools, hospitals etc - we are all different and require different levels of support to thrive and flourish, and at different times in our lives. But everyone has equal value, should be treasured, and should not be preventing from reaching their goals. This sounds trite and naive because unfortunately for huge numbers of people all round the world these are </span><span style="line-height: 18px;">impossible ideals - but I think equality of value is something to feel passionate about and strive towards. Every few weeks one of the parents of a child with a disability on one of my Facebook groups complains about a doctors or therapist who has, for some reason, decided to tell the parents what the child won't be able to do in the future. This is demoralising and sad, and has the effect of denying children their value in the present. When children are told there's little point in working hard to be walking and independent now because "they're likely to end up in a wheelchair when they are older" this is not valuing them in the present. The doctor or therapist may also "end up in a wheelchair" in later life but they would be surprised if someone suggested giving up and getting into one now. </span><br />
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<span style="line-height: 18px;">Humans naturally want to aim high and achieve and feel a sense of purpose and value, and that's where "</span><span style="line-height: 18px;">Liberté" comes in. We need the space and encouragement to make the most of opportunities that come our way. We are inspired by artistic ability, athletic prowess, exploration, lucrative innovation and we need to be free to make choices. So whilst I have a passionate belief in equality, which often leaves me feeling angry when I feel that others do not share it, I have to accept that relentless pursuit of equality will not bring a perfect world, and freedom to choose and to be different has to be pursued alongside it. </span><br />
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<span style="line-height: 18px;">I engaged in a few on-line and off-line discussions about the Charlie Hebdo cartoons and the expression of solidarity afterwards. It was clear that people hold very strong, and often opposing, beliefs about liberty of expression and to what extent respect, and strong religious belief, and cultural differences should limit our freedom. The discussions were quite uncomfortable. I then read an article by journalist Tim Lott in the Guardian, and although I didn't necessarily agree with it all, as I read it some of my uneasiness fell away. He suggested that we all hold strong "beliefs' that sometimes can't be verified and often are held so dear to us that we are not open to discussion about them. He then said, to my surprise, that "the alternative to belief is faith" - faith which accommodates doubt, which includes those in our midst who do not share our view. He wasn't talking about religious faith especially, just as deeply held beliefs are not always religious in the usual sense. He was talking about the faith in the reality of love, of the feeling of human connection, in reason, in the pursuit of truth. These words, too, have stayed with me.</span>Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-21937644048219260872014-12-07T15:02:00.000-08:002014-12-08T06:21:49.780-08:00Spring is just around the corner<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Arial, Helvetica, sans-serif;"> I usually find this a bit disappointing, and t</span><span style="font-family: Arial, Helvetica, sans-serif;">his 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".</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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:</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Arial, Helvetica, sans-serif;"><i><br />He will come like last leaf's fall.<br />One night when the November wind<br />has flayed the trees to the bone, and earth<br />wakes choking on the mould,<br />the soft shroud's folding.</i></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Arial, Helvetica, sans-serif;"><i>He will come like frost.<br />One morning when the shrinking earth<br />opens on mist, to find itself<br />arrested in the net<br />of alien, sword-set beauty.</i></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Arial, Helvetica, sans-serif;"><i>He will come like dark.<br />One evening when the bursting red<br />December sun draws up the sheet<br />and penny-masks its eye to yield<br />the star-snowed fields of sky.</i></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Arial, Helvetica, sans-serif;"><i>He will come, will come,<br />will come like crying in the night,<br />like blood, like breaking,<br />as the earth writhes to toss him free.<br />He will come like child.</i></span></span></div>
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My iPhone photo of Salisbury from Old Sarum - site of the earlier cathedral and medieval castle.<br />
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-88376269987478600922014-10-17T10:12:00.002-07:002014-10-18T01:38:03.587-07:00It'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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-14654773712152670752014-09-03T14:23:00.000-07:002014-09-09T22:39:14.451-07:00Beggars and benefactorsWhenever 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. <br />
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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.<br />
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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.<br />
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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.<br />
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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. <br />
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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?!<br />
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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!<br />
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<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-35548714840331489672014-08-22T00:41:00.000-07:002014-08-23T02:45:17.418-07:00Steel-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.<br />
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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.<br />
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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?<br />
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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.<br />
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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.<br />
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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.Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-81250846640911317742014-08-10T08:03:00.000-07:002014-08-10T14:04:43.112-07:00Eat 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! <br />
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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 <i>process </i>of learning and not just the <i>progress</i> and the <i>competition</i> with his classmates, although these are also motivators.<br />
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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.<br />
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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.<br />
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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?<br />
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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.Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-13054750534702152092014-06-29T00:25:00.001-07:002014-07-15T11:46:11.033-07:00An upside-down kingdom<div style="font-family: 'Trebuchet MS'; font-size: 16px;">
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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.</span><br />
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And yet who can actually match up to this ideal? Who looks at this list and thinks "yep, that's me!"? </span><span style="letter-spacing: 0px;">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!</span></div>
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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. <br />
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And I think that the pressure to be normal can actually make us like this:</span></div>
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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.</span></div>
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<span style="letter-spacing: 0.0px;">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.</span></div>
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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. </span><span style="letter-spacing: 0px;">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.</span></div>
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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. <br />
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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. <br />
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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? <br />
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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."</span></div>
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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. <br />
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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. </span></div>
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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. <br />
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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.<br />
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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: <i>"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".<br />
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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: <i>"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”.</i></span></div>
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<span style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: xx-small; text-align: center;">Servant King, watercolor on canvas by E. Wierenga, </span><a href="http://www.etsy.com/shop/canvaschild" style="background-color: white; color: #00818b; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 11px; line-height: 14px; text-align: center; text-decoration: none;" target="_blank" vglnk_1367720582992="2"><span style="font-size: xx-small;">www.etsy.com/shop/canvaschild</span></a></div>
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<span style="letter-spacing: 0.0px;">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: </span></div>
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<span style="font-family: 'Trebuchet MS'; letter-spacing: 0px;"><i>“Have</i></span><span style="letter-spacing: 0.0px;"><i> 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.”</i></span><span style="font-family: 'Trebuchet MS'; letter-spacing: 0px;"><i><br />
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<span style="letter-spacing: 0.0px;">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. </span></div>
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A quote from book called Vulnerable Communion - by Thomas Reynolds:<i><br />
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"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></span></div>
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Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com2tag:blogger.com,1999:blog-5036171294651481669.post-8008398154285619972014-06-08T14:32:00.000-07:002014-06-12T00:38:47.495-07:00I can do it by myself!<div class="separator" style="clear: both; text-align: center;">
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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.<br />
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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!<br />
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<a href="http://youtu.be/2jYXHdMoEgg" target="_blank">Immy's digital story on YouTube</a><br />
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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!<br />
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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!<br />
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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):<br />
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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.<br />
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<b><u>Equality</u></b><br />
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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.<br />
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<u><b>Empathy</b></u><br />
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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..<br />
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<u><b>Expectations</b></u><br />
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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. <br />
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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. <br />
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<br />Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-36813834715248590562014-05-30T15:07:00.003-07:002014-05-31T01:47:47.475-07:00Sorry, this school's not for you!<span style="font-family: Arial, Helvetica, sans-serif;">I was brought up in Leicester, which at that time, I recall being told, was the city with a higher proportion of people whose families were originally from India than any other city outside India itself. I've no idea whether that was true, but my classes were culturally-diverse, the radial roads out of the city were a blaze of sari shops and curry houses and I loved living in such an interesting city. I think that formative experience has made me quite colour-blind and I'm delighted that my children go to a school with lots of diversity too.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">But there was nobody in my own primary school who had a physical disability, as far as I can remember, and certainly not at my secondary school. I didn't know any disabled children. There was one much older girl down the road who used a wheelchair, but I don't recall ever speaking to her. Despite doing A-levels in science and science degrees I don't remember ever being taught about the causes of disability, some of the common disabilities or how the world around us can be made more inclusive. I now recognise that some children I thought at the time were odd or very shy probably had autism to some extent. It was only when I was invited to became a governor in a special needs school (before Immy was born) that I started to understand about inclusion and disability equality.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When I began to look into school options for Imogen it was obvious quite early on that things were not going to be plain sailing. The first head teacher we met made it clear that since Immy had cerebral palsy she would be much better off in a "unit" attached to the school. She didn't know anything about Immy's academic and social abilities at that point... and we didn't give her the opportunity to find out. The difficulties we've faced since then have all been around getting the local authority to fund the right level of support, and two big battles, which frankly astonished me, to get disabled toilets built. </span><span style="font-family: Arial, Helvetica, sans-serif;"> Immy's school has been brilliant though - she's been welcomed, valued, supported and well cared for there and is making great progress. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I began to realise that lots of our schools in Cardiff did not have basic levels of disability access in place, and when I asked for some data on this I was told there were none - and instead I was sent 120 access audits on every school in Cardiff, most very out of date. To cut a long story short, driven by anger and frustration I spent weeks of my own time building up a bank of knowledge on the wheelchair-accessibility of schools across Wales that has captured the interest of the Children's Commissioner for Wales and resulted in his office carrying out a review, which is currently underway. I've also corresponded with politicians and officials at UK, Wales and Local Authority level - and exposed a huge amount of non-compliance with legislation. If you want to read about my work, I've added a presentation to one of my pages <a href="http://dreamingequality.blogspot.co.uk/p/school-heelchair-access-research.html" target="_blank">HERE</a>. There are some case studies at the end that are particularly worth a read. Few people realise how many children end up being separated from their siblings and peers simply because a school is not accessible. </span><span style="font-family: Arial, Helvetica, sans-serif;">Of course not all children with disabilities will thrive in a mainstream classroom, but I believe that every school should be able to cater for children who cannot climb stairs.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">"Why has this situation been allowed to continue?" you may ask. This is probably the slide that best answers your question.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br />The root of the problem is that school buildings were made exempt, more than ten years ago, from the duty to make reasonable adjustments that applies to other public buildings. Schools and local authorities are instead bound by accessibility planning duties which they pay little attention to, on the whole.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The even deeper root of the problem is that children are generally not seen as having rights, and few people stop to think about how it feels to be told you can't attend a school with your friends and siblings, or can never enter huge areas of a school. Immy has only been upstairs at school once when I helped her up the stairs to see the 6 classrooms that she would otherwise be working her way through as she progresses to year 6. And that was a hugely emotional experience for her. Her classmates are not getting that "progression" experience either - but at least they can pop upstairs on occasions. Take a look at the "Equality" rhetoric and bureaucracy in governments and local authorities. It's all about the workplace, glass ceilings and public transport. All important stuff, but children don't get much of a look-in.</span>
<span style="font-family: Arial, Helvetica, sans-serif;">To me it is blindingly obvious that if you want to make the world a more inclusive and accepting place, and avoid repeating the awful tragedies that result when people turn against those who are different - tragedies within living memory across Europe - then we have to expose our children to diversity. Just teaching children to be inclusive and kind is of very limited value - rubbing shoulders day by day with children from different backgrounds and with different abilities has a much greater and life-long impact. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Disability hate crime is an awful and terrifying thing - the prospect of which is a bit of a recurring nightmare for me - but I think it's far less likely that any child in Immy's school will ever be a perpetrator.</span>Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-72615808450794988972014-05-09T03:12:00.000-07:002017-12-07T00:17:15.502-08:00A grain of wheat<div style="font-family: Helvetica; min-height: 13px;">
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<span style="letter-spacing: 0px;">We are not particularly green-fingered… Our idea of gardening is mowing the lawn, harvesting anything edible that has grown by itself … and otherwise hacking the whole thing back dramatically twice a year and then watching in surprise as things re-emerge.</span></div>
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<span style="letter-spacing: 0.0px;">But having small children means you feel you really ought to grow a few things, so we planted a few seeds last weekend and this. You open the packets, these teeny tiny little specks hidden in the bottom corner. You’d struggle to find one if you dropped it on the floor. Then you press a few down into the the damp, dark earth, cover them, water them and just wait…</span></div>
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<span style="letter-spacing: 0.0px;">.. and nothing happens. Perhaps they won’t germinate. Did I over-water them?</span></div>
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<span style="letter-spacing: 0.0px;">.. and then after a few days the tiny green shoots appear. And eventually, hopefully, after some more faffing about with soil and pots we might have a huge bean stalk, or a chunky carrot, or some marigolds. Each with their own flowers and new seeds… and so the cycle of life continues.</span></div>
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<span style="letter-spacing: 0px;">I’ve been pondering this, and the words of Jesus: </span></div>
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<b style="font-family: Helvetica;">"Unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit.”</b></blockquote>
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<span style="letter-spacing: 0.0px;">The thing about that seed is that it’s very small and insignificant on its own - it’s fully formed, and full of potential, but it’s not really achieved anything. It’s just one of many. </span></div>
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<span style="letter-spacing: 0px;">When the doctor in Norwich told me that Imogen probably had cerebral palsy and there was nothing that could be done to heal her, that was when the bottom dropped out of my world - to use a cliche which is remarkably accurate. I was like that seed, being pushed down into the dark soil, more soil on top, water on too. In the dark, damp nowhere land - along with the dreams I had about my own future and that of my tiny daughter. There was little light to be seen. </span></div>
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<span style="letter-spacing: 0px;">And this metaphor isn’t perfect because despite emerging from that dark place I quite often find myself back in it again, often in the middle of the night, for example thinking about how hard it is for Immy to integrate with other children, and how this makes her sad. I find myself staring bleakly into the future, realising that the things that disabled people need to flourish and co-exist (let alone “compete” and “contribute”) are expensive and require people to be patient. And when it comes to it, whilst friends and family are astonishingly generous, society as a whole doesn’t actually want to be patient or devote resources to caring, or to changing things to make them more accessible.</span></div>
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<span style="letter-spacing: 0px;">One of the main things that people take for granted is the choices we have about our future. So to stretch this metaphor in a different direction a new baby is rather like that tiny shoot when it first pokes through the soil - unless a label has been put into the soil nearby you’ve no way of knowing how it will turn out. It could be an oak tree, or a sunflower. When a baby is born it is possible that she or he will be an athlete, a surgeon, a famous artist or musician, and maybe eventually a parent and grandparent. When you look at a tiny newborn baby sleeping, nothing is inherently limiting what that child could become. It is usually a few years before we have to take decisions on school subjects and activities in our spare time that will lead us down one path and block off another. Eventually you accept you’re not going to play for Man United, or be a concert pianist or join the circus. <span style="font-size: 11px;"> </span></span></div>
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<span style="letter-spacing: 0px;">And in the moment you learn your child has a disability, that limiting of future choices is by far the heaviest, sickening blow. Your baby suddenly looks alien to you - instead of a beautiful child with a future of possibilities you are staring at a worrying and frightening little creature, and feeling guilty for not being overwhelmed with love and maternal feelings. It is devastating.</span></div>
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<span style="letter-spacing: 0.0px;">For those of you that don’t know our story, I’ll start with mine. It’s probably best described as plain sailing until I was in my early 30s. I have always worked very hard and been a high achiever. There were very few objectives, academic, sporting, creative or musical, that I wasn’t able to succeed at by trying harder. I had been largely in control of my own progress, and not come up against any major obstacles to success. I completed a science PhD, moved to Norwich, got married and then embarked on a career in the civil service, being promoted rapidly. Alongside this I had always been to church, leading Sunday School, singing, playing piano and organ. Doing voluntary and charitable work wasn’t something that had ever been suggested to me as a child or young adult, although I did become a governor, and then chair of governors, in a special needs school near to where I lived.</span></div>
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<span style="letter-spacing: 0px;">The first big challenge of my life, where my “just try harder and you’ll succeed” motto proved useless, was when we wanted to start a family. It just didn’t happen without a lot of waiting and intervention, and basically very little has gone to plan with Imogen since then! She was born a little early and was very sick. She spent the first 2 1/2 weeks of her life in hospital with liver problems that made it difficult for her to process her food and stabilise loads of other chemicals in her body. Nobody knew what had caused her problems, or what exactly should be done to help her recover. But gradually her liver healed and we had the all-clear when she was just 8 months old. This was just before her christening….. and just a couple of weeks before two major changes to our lives. Firstly a paediatrician told us that her stiff hips and legs were probably due to cerebral palsy, and that she might never walk. And then at almost exactly the same time we heard that my husband had been accepted for a job in Cardiff and we were moving away from all of the friends and support network we had around us. </span></div>
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<span style="letter-spacing: 0px;">A very dark patch followed. Worries about a bleak and unknown future were mixed with anxiety about day-to-day decisions, exhausting rounds of appointments and interventions, and battles to get the therapy and equipment Immy needed before it was too late to be useful. Added to this was the loneliness, and the stress of trying to appear friendly and normal in order to make some friends. I still struggle at times with feeling isolated and lonely, which I had never suffered from previously.</span></div>
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<span style="letter-spacing: 0.0px;">I don’t think I ever asked “why me?” because that didn’t seem like a useful question, and in any case the obvious retort is “why not me?” - misfortune of this kind seems to hit at random. But despite never really asking the question “why me?” I gradually began to see my way to an answer. I became more aware that the things I had been taught to do all my life - my scientific training, my public sector management career, my skills at speaking and writing clearly, and most of all my faith, could all be channelled into helping lots of other people and not just myself and my immediate family. </span></div>
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<span style="letter-spacing: 0.0px;">That’s when I feel that, like that new seedling, I had started to emerge from underground with a sense of purpose. The beautiful thing is that, instead of just focusing on realising my own potential like that little seed in the packet I can use what I have learnt to reach out to others facing similar challenges, to stick up for those who can’t so easily speak for themselves, and to challenge assumptions and poor performance by the organisations that are supposed to help. </span></div>
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<span style="letter-spacing: 0px;">It’s that period underground that causes a seed to germinate, to emerge, to grow and produce beautiful flowers, or leaves or stems for food, or fruit, and ultimately more seeds to go on multiplying the goodness. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; letter-spacing: 0px;">And that’s the story of Easter - as well as physical death leading to eternal life, it’s about a new heaven and a new earth, the transforming of the ordinary into the beautiful here and now. The hope that triumphs and is made more vibrant through suffering. The peace that comes from placing all the pain and puzzling into God’s hands when your own are just too small to hold it all. It’s that dark, seemingly hopeless, time deep in the soil that leads to the miracle of new life and fruitfulness.</span></div>
Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-78053748836787044662012-01-06T13:40:00.000-08:002012-01-06T13:40:11.725-08:00blog moving to websiteI've just about figured out how to put up blog posts on our new Wordpress website - so I'll probably not be using this site any more. Mind you, the blog post that I just wrote on the site didn't appear. I hope it's not disappeared into the ether... wouldn't be the first (nor probably the last) time I lost an hour's work!<br />
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Go to www.immyfindsherfeet.com to continue with the story.Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0tag:blogger.com,1999:blog-5036171294651481669.post-23715310193240625772011-12-29T08:05:00.000-08:002011-12-29T08:05:29.311-08:00website up and running!Well - we have our new website up and running now. It's still work in progress but it has the basic information (all of which you've already seen on here) and a DONATE NOW button into our Paypal account, which will forward into our special bank account. Thanks Steve Dunton!! It's www.findmyfeet.me.uk, and is still work in progress.<br />
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The plan is that it will develop so that individual fundraising groups and events can have their own blog on the site with updates, photos, and pledge calculators... I'm still not sure whether that's all possible yet though...<br />
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We just checked the payment facility and it seemed to work. Mind you, Paypal takes an admin fee, so a cheque payable to "Immy Finds Her Feet Fund" in the post is better to maximise the donation. We can't do Gift Aid as you can't set up a charity for a single individual.Sue Hurrellhttp://www.blogger.com/profile/00085162632102020977noreply@blogger.com0