Like many people in the Twittersphere with an interest in children’s rights in health, the recent loss of the amazing Adam Bojelian has resonated for me on both a personal and a professional level. Adam was a poet and campaigner who packed in so much into his 15 short years. Although like many, I was never able to meet Adam in person, I nonetheless miss him very much and there is a huge Adam-shaped gap in my Twitter world. But other people have written about this really well, including Carmen Soto, Rob Webster, Paul Clarke and many others (see #braveAdam and #celebratingAdam on Twitter). So I won’t duplicate what they’ve written, although I would echo much of it, instead I want to focus on what Adam’s life and death mean to me in relation to my work on children and young people’s rights in health services.
This post was inspired by one written by Adam’s mother Zoe, which I found simultaneously heartbreaking, amazingly brave and utterly inspiring. In the midst of the analysis of mountains of PhD data I find that it is easy to lose sight of the bigger picture. But Zoe’s post brought home to me why children’s rights in health matters now more than ever, and why those of us working in this area should keep fighting to make a difference. So this post is from my heart as much, if not more, than my head. As Zoe writes, we should all seek to be ‘similar to Adam’ and ‘ensure the voices of children and young people, most notably disabled children and young people, are heard loud and clear within the NHS’.
I have written about this in the past (see for example post on 2014 UCLan seminar, and one from CSCY conference) but it’s perhaps best summed up by one of the young people with whom I’ve been working who wrote a guest post in which she says ‘when good participation happens, both parties learn and gain from each other in equal measure’. Lessons certainly need to be learnt about what happened to Adam, but I think lessons can also be learnt about how social media can be one way for children and young people to have a voice. Although it doesn’t work for everyone, and many platforms aren’t accessible to all children and young people, the way Adam was able to use Twitter to engage with ‘movers and shakers’ in the NHS and beyond was I think a lesson in the democratising potential of social media. I always remember one interaction early on in our Twitter relationship when Adam, who had I think been in hospital for six months or so at that point, tweeted that he hadn’t been able to have a bath during that time because of access issues. His reach on Twitter was such that this issue was rapidly escalated and suddenly, after months of face-to-face requests being denied because it ‘wasn’t possible’ Adam tweeted that he’d been told a way had been found to make it happen and the twitterstorm abated*. As Adam communicated by blinking the way he used Twitter to create change and raise issues highlights the need to consider what we mean by, and how we enable, children and young people’s voices. Participation need to happen at both a personal level: with children, young people and their families involved in decision-making about individual care and the services they use, as well as at a more strategic level: in planning, shaping, delivering and evaluating services and influencing policy.
I don’t have many answers yet but, inspired by Adam’s life and Zoe’s post, I will now return to my studies with a renewed zeal to play my small part in promoting children and young people’s rights and voice in health services and the research which informs them. I will become one of “Adam’s Allies” – will you?
If you would like to donate to the cause which Adam requested be his legacy: https://www.justgiving.com/AdamBojelian15
*Although Adam’s mother told me after I first wrote this post that he never did actually get a bath – so maybe there’s a lesson there about social media being good for raising issues/generating heat but that this doesn’t necessarily mean it leads to real-life action?