Sorry, this school's not for you!

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.

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.

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.  Immy's school has been brilliant though - she's been welcomed, valued, supported and well cared for there and is making great progress.  

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on this I was told there were none - and instead I was sent 120 access audits on every school in Cardiff, most very out of date.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 HERE.  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. 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.  

"Why has this situation been allowed to continue?" you may ask.  This is probably the slide that best answers your question.

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.

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. 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.  

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.

A grain of wheat

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.

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…

.. and nothing happens. Perhaps they won’t germinate. Did I over-water them?

.. 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.

I’ve been pondering this, and the words of Jesus:  

"Unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit.”

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. 

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.  

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.

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.  

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.

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.

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.  

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.

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. 

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.  

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.  

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.