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!
Immy's digital story on YouTube
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!
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!
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):
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.
Equality
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.
Empathy
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..
Expectations
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.
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.
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