On a chronic illness level, 2021 was tricky for me. Long Covid has a real penchant for continuing to chuck new constellations of symptoms at many of its people, for which I am no exception, on schedules which despite my best efforts get only a little easier to predict over time. Finding a meaningful vocabulary for symptoms, in their specificity and groupings, is a whole exercise in itself–fatigue, inflammation, and brain fog for instance, come in many flavours. Planning is often reduced to a nice but pointless concept.
Still, I’ve been incredibly fortunate in many ways throughout the pandemic. Thanks to living rent-free with my parents, and particularly the support of Mum with all things cooking and shopping, not to mention sorting out not-so-straight-forward Norwegian health system bureaucracy, I’ve been able to use what energy I’ve had for things other than daily survival. I’ve managed to stay connected with disability, political and overseas Kiwis advocacy communities back in Aotearoa in many ways–y’all know who you are. While the day-to-day of advocacy and report writing can have its ups and downs, keeping this human connection around all of the bits and pieces I can do remotely across time zones and, largely, from bed, has continued to be important for me and something I’m very grateful for.
Via the European Network on Independent Living, I’ve started to learn about the historical and current challenges within IL movements, and in particular, the many sorts of deep harm that the institutionalisation of disabled people continues to cause today. It’s been a cool counterpoint to learning more about the Enabling Good Lives system in Aotearoa, where the vocabularies are mostly distinct from those of the IL movements elsewhere, though the goals of disabled people having greater choice and control over our lives, including where we live and the support available to us, are very similar.
I’m also appreciative of having been able to keep in touch with more friends than usual this year. I’ve found asynchronous Whatsapp (or signal) conversations, where we can send voice messages back and forth whenever might suit, working particularly well for me. A great many books, fascinating online reads and podcast episodes have also kept me company.
In other news, I finished my thesis and at last have a Masters in Investigative Journalism. Our schedule, from March 2020, proclaimed that the thesis was supposed to take eleven weeks, with an optional summer extension if needed. Instead, it took me close to a year and a half. Honestly, the scale of it was not an especially wise decision to try and manage while chronically ill, but to be fair to my admittedly stubborn self, rerouting projects (especially interview-based ones) already well in train isn’t terribly straight forward, either.
On the bright side, I got the chance to talk to ten journalists whose work I greatly respect, about covering climate change;. I gained a much better appreciation for qualitative data analysis methods (including finding a way to do what I needed in excel because there’s an inexcusable drought in the land of screen reader-friendly QA software, ^ PSA to any comp-sci students looking for a final project…). On the dark side, I plumbed the depths of Microsoft Word’s bottomless capacity to break its own multilevel list formatting. I also survived a very stressful night of thinking I could almost hand in my thesis by an earlier deadline–which I found out about mere days beforehand–by … not, in fact, handing it in.
In the end, I produced a final product which unfortunately did not earn a distinction but which I am still proud of, not so much for any great insight contained therein, but for having completed it to a standard I was satisfied enough with. I also bullied the free version of wordpress.com into making a mini site where I included a (hopefully) reader-friendly thesis overview, in a bid to decrease the odds of my long-suffering baby vanishing into a black hole. I also wrote a piece based on my research for The Conversation. The media outlet features explainers and analysis by academic researchers. Considering that my Dad is an internationally renowned and respected scholar (who is also on the IPCC), emailing him the link to that article was a proud moment.
I also ventured into unfamiliar territory this year by starting Disability Crosses Borders. Through making this podcast and associated blog, I wanted to open up a space for conversations where disability, migration and culture meet. Having felt dislocated throughout the entire pandemic, making this little show has been the most fulfilling thing I’ve done this year, and, together with sending a certain thesis out the door, the thing I am proudest of.
Interviewing guests, somee who I knew to varying degrees before, some not, has given me the chance and great privilege to be in community with them, and often to kindle relationships I value a lot. I actually enjoy the audio editing and putting together a written piece on each episode as it means I get to really listen and reflect on what each person is generously sharing. I also really appreciate the crew who’ve voluntarily contributed to making sure there are full transcripts for each episode.
It’s been liberating, and crucial health-wise, for me to be able to shape DCB without the confines many larger media outlets have. I can try my best to make sure the stories and conversations are the ones that my guests genuinely want to have, and want to share. I can chat to them in advance, send them draft questions, and cut out anything they aren’t comfortable with afterwards. I can reschedule interviews as many times as my guests, or I, need. (In 2022, episodes will be a bit less frequent, as I’m making an effort to step back from many things in order to focus on my health).
Getting the word out about DCB has been tricky, so if you’d like to give me a belated christmas present, I’d be delighted if you’d like to check out Disability crosses Borders in written form here, or look for it wherever you listen to podcasts.
With that, here’s to the end of 2021! Wishing all of you the best of 2022s, surrounded by love and happy moments and fortitude to carry you through another doubtless rocky year ahead.
2 responses to “2021”
With my science translator hat on, thanks heaps for a great thesis! I enjoyed it and learnt about how poorly NZ funds public journalism. It truly shocked me to arrive here as a migrant over a decade ago and discover the appalling state of RNZ compared to the, at that time. robust Australian Broadcasting Commission with its much broader programming. Funnily enough I tackled Director of Programming John Howson on it and used the precise example of both-sides-ism when critising RNZ climate reporting. His view of journalism was firmly in the silly camp of both-sides-ism and competing with the trashy commercial sector. I actually blame much of the delay worldwide on this relativist school of journalism. Good luck with the long COVID.
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Thanks for reading it Kevin. And yes, I didn’t have an appreciation of quite how poor public funding of journalism was on a relative scale either. Melanie Bunce’s book The Broken Estate is a good exploration of NZ journalism (as at 2019). I’d love to see RNZ have multiple times the funding it does but equally would love to see management prioritising climate reporting a lot more. It does sound like it’s moving in the right direction, only much too slowly!