Today I attended the presentation of this year’s Shaking Tree Award. This annual award started in 2016, and is named after my friend Niels who received the first award during his ‘last lecture‘. Niels died a year ago. The Ministry of Healthcare has pledged to keep going with the award, in the spirit of Niels’ efforts: shake up the system, fighting unneeded and kafkaesque bureaucracy, have hands-on experience with the system at ‘the receiving end’ so you know what you’re talking about, have a sense of humor to go with it, and be able to ‘dance with the system‘.

The meeting was attended by a diverse range of people, from the healthcare domain, Niels’ family, and of course a smattering of Niels’ friends.

Before presenting this year’s nominees and the award, time was given to remembering Niels and the reason for this award. This was followed by two conversations between a previous winner and nominee and a representative of an institution they struggled with. First were Annette Stekelenburg and Ria Dijkstra, manager operations at a health care insurer. Annette has a son that needs tube feeding to survive. This situation will not change. Yet every year they need to apply for approval to continue receiving the materials needed. Annette and Ria had a frank conversation about what happened when Annette publicly announced she was fed up with this yearly bureaucracy that should be unneeded. Dijkstra explained how they thought that they had already changed the rules, making the renewal once every 5 years, but that the suppliers never knew, and that forms are being sent out in the insurers name that don’t actually exist anymore.

The second conversation was between Kathi Künnen, a previous nominee, and Betsie Gerrits, department head at UWV, the government agency in charge of employee insurance. Kathi is 29 and has incurable cancer. Because of that she has been determined to be 100% incapable of working, yet there are lots of phases where she actually does want to work. 25% of young professionals with cancer have an incurable form, and most want to remain active as long as possible. Yet the system tells them their ‘earning capacity is 0’ and with a stamp like that there’s no way to find paid activity. Here too, the conversation first of all made the two parties at the table see each other as individual human beings. And from it energy and potential solutions follow. Kathi said she needs reassurance that there can be administrative certainty (other than being tossed out as worthless), as her own life is fluid enough as it is and changing all the time.

I thought both conversations were impressive, and the type of thing we need much more of. Once you get past the frustration, anger and disbelief that often plays a role too, you can see the actual human being at the other side of the table. Dancing with the system is, in part, being able to have these conversations.

The award was presented by the previous winner, Tim Kroesbergen, and the secretary general of the Ministry Erik Gerritsen was host to the event, with Maarten den Braber as MC. The jury, consisting of Sanne (Niels’ wife) and the previous two winners, Annette Stekelenburg and Tim Kroesbergen, made their choice known from amongst the three nominees: Eva Westerhoff, Elianne Speksnijder and Geert-Jan den Hengst. All three nominees were presented by a video, as well as a conversation about their experiences.

Eva Westerhoff is a disability rights advocate & accessibility consultant who happens to be deaf. Next to her job at a bank, she does lots of volunteer work on diversity, inclusion & accessibility in information, communication & tech. She’s been knocking on doors in the Healthcare Ministry for over 20 years. Today she said that because of the political cycle, it seems you need to do everything again every four years or so, to keep awareness high enough.

Elianne Speksnijder is a professional fashion model, photographer and story teller. Lyme disease and epilepsy caused her to land in a wheelchair when she was 15. As she said today, an age which brings enough difficulties as it is. It took her a decade to accept that her wheels were a permanent part of her life. She’s 28 now, a woman with ambitions ‘on wheels’. When she was a teenager she sorely missed a role model (or rolling model, as the Dutch word ‘rolmodel’ can mean both). Now she is setting out to be that role model herself. She hopes for much more inclusivity in media, and challenges companies about it.

Geert-Jan den Hengst, is a 48 year old father of two adult children. He has MS and has been living the last decade or so in an environment that provides 24/7 care. His laptop is his core conduit to the rest of the world. Writing is a need for him. He blogs on his own blog, and writes for the local football team’s website, various media in his hometown and more. At the heart of his writing are everyday observations. He says he is “not a political animal, so I need to stay close to my everyday life in what I do”. Often those observations are examples of how life can be made impractical for someone in his position. He mentioned an early example that got him started: for the local football stadium all types of tickets could be bought online, except for …. tickets for wheel chair access. People with wheel chairs needed to come buy the tickets in person. The group least likely to be able to do that easily.

From all three nominees, I think the main takeaway is taking the time to share and listen to the actual stories of people. Especially when things get complicated or complex. Not news, there’s a reason I’ve been active in participatory narrative inquiry and sense making for a long time, but it bears repeating. Stories are our main way of ‘measurement’ in complex situations, to catch what’s going on for real, to spot the actual (not just the intended) consequences of our actions, structures and regulations, to see the edge cases, and to find the knobs to turn towards getting better results (and know what better actually is).

Jury chairman Tim Kroesbergen after reading the jury motivations for all three nominees, announced Eva Westerhoff as the new Shaking Tree Award winner.


The Shaking Tree Award statuette (photo by Henk-Jan Winkeldermaat, CC by-nc-sa)

Inside the Ministry a poem by Merel Morre is painted on the wall, that she wrote in honor of Niels ‘Shakingtree’.
A rough translation reads (anything unpoetic is all my doing)

outside

shake goals awake
jump past rules
dance joints wider
dream chances free

out of bounds
outside limitation
it grows
as it grows

tree high
dream high
where it lighter
but never stops

In the ministy’s central hall all the pillars show a face of someone with the words “I care”. That and the poem are promising signs of commitment to the actual stories of people. The Ministry still has 24 statuettes in stock for the Shaking Tree Award, so there’s a likelihood they will keep the annual award up as well. But as this year’s winner Eva Westhoff warned, every 4 years the politics changes, so it’s better to make sure.


The faces in the Ministry with the text ‘I care’

Today news reached us that Niels Schuddeboom has passed away. (His last name translates as ‘Shaking tree’ in English, which was the name of his company).

A little over a year ago he held his last lecture, where he celebrated his love for life and called upon us to carry on and be a torchbearer. A week less than a year ago he became a Knight in the royal Order of Orange-Nassau, in recognition of his contributions to Dutch society.
Two days before Niels died his very last Tweet reads “Let me see what I can do for you with that”.

During his ‘last lecture’ in November 2016, he said he hoped to have cancer for a long time. That long time (longer than expected, yet too short) has now come to an end. The card announcing his passing we received in the mail started with “The tree has fallen”.

Thank you for your energy, friendship, humour and wit, Niels.

My friend Niels is dying and is celebrating life. Today he gave his ‘Last Lecture’ (viewable here in Dutch, Niels’ lecture starts at 42:00), following the example of Randy Pausch in 2008, in front of 400 people. He made us laugh, he made us think. He made us connect. So we can continue on after he’s no longer here. He turned us into his torch bearers, fakkeldragers in Dutch. That #fakkeldragers was the number 1 trending topic on Twitter in the Netherlands this morning, even as a major storm passed over and we like nothing more than discussing the weather, tells you a little something about Niels.


400 people in the audience

I met Niels 10 years ago. He reached out to me online to ask me a question. Today he said to realize your dreams you have to start by asking a question. He asked me about learning online. He was a student then, and despite assurances to the contrary he could not access the univ’s buildings with his electric wheelchair and fully participate in the curriculum (Niels has spasticity and requires daily care). Undeterred he set out to arrange his own education online. We explored Second Life together, and we hung out in knowledge management fora, on blogs and social media. Only some 3 years later we finally met face to face, on a Mobile Monday meet-up in Amsterdam. Later we were both active in the topic of complexity management, and worked together to help build up a new company around participatory narrative inquiry. He married, and became a father, and despite every Kafkaesk requirement the ‘system’ threw at him he cut out his own path and became an entrepreneur. “He does not think it is impossible he’ll hold a regular job” someone wrote in his case file once. Another that he was a difficult patient to work with as “he keeps insisting on creating his own plans”.

His sense of humor not only keeps him sane, but also is his primary ‘weapon’ to create a space to be heard in health care and social care discussions and systems that are mostly accustomed to deciding or talking over him. “My case file never mentions the happinness of our family or the joy I find in my work” as key to personal wellbeing. That also drives him as an entrepreneur, where ever he goes he brings together those stakeholders that normally don’t enter into a proper conversation, and in those conversations plants the seeds to make the social and health care system work better. To replace faceless bureaucracy with a human face. To align the sometimes bewildering logic of the system with the logic of actual life. To make the system more efficient as well as more effective that way. Niels his last name roughly translates into English as Shaking Tree, and that became his brand. Shakingtree Interventions shakes things up. All trees in the Netherlands shook today, because of the mentioned storm, and it seems a fitting tribute.

A testament to him shaking things up is that the Secretary General of the Ministry of Health Care was an opening speaker today. He launched the annual ‘Shakingtree Award’ and presented the first one to Niels himself. At the same time he asked Niels, as he is wont to do anyway, to set the criteria for the Shaking Tree Award. Those criteria center around having experience with the health care system, being able to shake things up, and having a sense of humor.


The Shakingtree Award Statue, a tree of touching hands

Even if this maybe, hopefully, isn’t his real last lecture, “I hope I will have cancer for a very long time”, it was a great day to call upon 400 friends, colleagues and strangers to step up and be a torch bearer, a #fakkeldrager. That message, even without his personal shout-out to me to ‘fix this already’ (to use maker spaces to create cheaper tools and adptations), was loud and clear to all I think. Niels wants us to learn how to “dance with the system“, that was his lesson for us today. He is launching a ‘social domain lab’ to continue teaching that.

Today was a good and a fun day, despite the reason why it was organized. Or as Niels quoted Pema Chödrön “We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” Over the past 18 months in my personal life I’ve learned (again) that to me beauty resides in that space where such layeredness is allowed to exist. Today reinforced it once more. Thank you Niels.