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)