Monday, 28 September 2015

Swimming upstream

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

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

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

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

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

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

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

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

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

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

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

Thursday, 2 July 2015

The 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.

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.

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.

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.

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.

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.

Is it too much to ask? I hope not.

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.

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!

British Camp - Iron age fort on the ridgeway near Malvern

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.

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.

Best foot forward then!

Sunday, 26 April 2015

To the moon and back

We take it for granted that children with disabilities should be cared for within 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.  

The fact is that no institution and very few temporary carers can compete with the fearsome love and dedication that parents of children with disabilities bring to bear in fighting for their child's best interests. I could easily fill a book with examples of parents doing incredible things to give their disabled children the best possible chance of achieving their potential and being confident and happy 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.

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!

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.

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.

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.

Friday, 23 January 2015

Virtues hunt in packs

"Virtues hunt in packs". These words really struck me when I heard them on the radio as I was making the children their breakfast a couple of weeks ago, and I have been pondering them since. Revd Sam Wells, Vicar of St Martin in the Fields, was on Thought for the Day talking about the French national slogan "Liberté, Égalité, Fraternité" shortly after the shootings in Paris. His point was that in an effort to uphold "liberty" of speech we cannot lose sight of equality - the same liberties (and rules and opportunities) should apply to everyone. But more than that - what do we do when someone's views are incomprehensible, ridiculous or unpalatable to us? That is where the last part of the triad comes in.  Fraternity is the virtue required when we have to live alongside, and value people with whom we may seem to lack any common ground. It is certainly true that ridiculing someone is not the best way to win them over to your point of view.  It is also true that killing people who ridicule you or your faith cannot be justified, ever.  These three French virtues need to be held in tension together as the three corners of a triangle pull out into a strong shape. 

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! 

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:

equally valuable.  

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 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.  

Humans naturally want to aim high and achieve and feel a sense of purpose and value, and that's where "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.  

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.