The New Normal

It takes a while to adjust to the fact that you’re a cancer patient. A scary while within which you can’t quite believe what is happening to you. But cancer is never a short-term thing like having a cold or a broken leg and I’ve found that you have to adjust, and all of a sudden being a cancer patient seems like the new normal. Today I have a meeting with my oncologist – but that doesn’t seem like an unusual thing to have anymore – I’m now a person who has an oncologist. That’s just what’s happening. On Monday I might be going back onto chemo, but even chemo seems like it’s just part of the new normal of my life. Sure, there’ve been bad weeks – but doesn’t everyone have a bad week once in a while? 

It’s confusing because the chemo is working so well that most of the time I feel perfectly healthy, apart from the side effects of the chemo itself. In fact, cancer has become so normal that sometimes I forget I have it at all. Since being diagnosed I’ve been to festivals, raves, parties, weekend breaks in the countryside, storytelling classes, UCL courses, on long walks and out to pubs and meals with friends. I drink less than I used to and I get tired quicker, but in general my life hasn’t changed all that much, apart from the chemo and oncology regime which has just kind of faded into the background and become part of what I do these days. Even the uncertainty is something I’ve become familiar with even though that’s the scariest part. Will this year bring surgery? Radiotherapy? More chemo? Different chemo? At the moment I don’t know – and I suspect my oncologist doesn’t either. I have had to get used to taking each day as it comes, so I am grateful for all of them. That is my new normal.

So Happy New Year dudes. None of us really know what’s going to happen in it, but I hope it’s a good one for both you and me. Big love.

Chemo!

img_20160720_153030One thing a lot of people ask me at the moment is what it’s like to go through chemo. From what I’ve learned talking to other cancer patients it differs for everyone, but here’s a lowdown for those who are interested on my typical two-week cycle.

Monday, Week 1 – It’s chemo day! I put on my dinosaur pants and monster socks and make my way to the Macmillan Centre for 11am, usually after doing a bit of last minute laundry or shopping or whatever for the week ahead. I give them a blood sample so they can look at my blood count – this lets the nurses know if I am safe to have chemo today, based mostly on my white blood cell count. If my reds are low they’ll schedule me for a blood transfusion, but if my whites are too low then I can’t have chemo for another week. After the blood test (with the gentlest nurses ever – no “sharp scratch” here!) I head up to floor 2, which is a beautiful atrium surrounded by art and full of more amazingly nice nurses. Here I wait for my portacath to be accessed with a special needle – this is where the drugs will go in and blood should come out. Unfortunately my portacath is a bit awkward when it comes to getting blood back, which the nurses have to do to make sure all the drugs will go in the right place – getting it to work usually involves some acrobatics from me, but we always get there in the end. Now that it’s working, the portacath is connected up to two drips. For half an hour I get pre-chemo drugs – a million tonnes of steroids and some glucose. Then the chemo begins. I’m on a 3 drug regime called FOLFOXFIRI – this starts with half an hour of irinotecan, which makes my nose run like anything and my head feel a bit woozy. Then I get two hours of oxaliplatin and a mix of vitamins and stuff intended to make the drugs work more effectively. Usually my chemo buddy Cat has turned up by this point and we sit and chat through the wooziness, or work on art projects, or play silly space-themed card games. Finally I get a half hour flush of salt water and some more glucose, and then I get connected up to my bottle of 5FU (or “Five Fuck Yous to Cancer”, as Cat and I have taken to calling it), which will feed me the final drug over 48 hours using an amazing vacuum system. By now it’s about 6.30pm, and we head home and eat some pizza or something. I won’t sleep – I’ve had too many steroids – but that’s ok because Netflix exists.

Tuesday, Week 1 – At the beginning I would get super-tired on Tuesdays, but as the chemo regime has continued I’ve acclimatised a lot, so on Tuesdays I get on with some projects or work and take a loooooong nap in the afternoon. Sometimes my lovely boyfriend comes over and we go on a little Pokehunt and watch Star Trek. This will change a bit from next week when I start going to classes at UCL in the afternoon, but I think I can handle this in terms of energy levels because I’m a badass. Oh, I also get mild neuropathy for a couple of days, which is a tingling sensation in my fingertips and throat whenever I touch/drink something cold. I find it more amusing than annoying, but I’ve been warned it could get worse as winter sets in and the oxaliplatin builds up in my system.

Wednesday, Week 1 – Another day of resting, but again I’ve acclimatised a lot and usually get on with some work in the morning. After my afternoon nap I head to the Macmillan Centre to have my portacath and 5FU bottle disconnected. This is a great relief – it is really quite stressful having to remember to carry the bottle everywhere with me, and the nurses have told me some horror stories about patients who forget and rip out their portacath needle accidentally!

Thursday-Saturday, Week 1 – By the end of the week my energy levels start returning. I go to a meditation/yoga class on Thursdays, and often find I’m keen to cook for my housemates. Again, from next week there’ll be afternoon classes at UCL to attend – bring it on!

Sunday, Week 1 – Today I have to start injecting myself in the stomach in order to make sure my white blood count stays high. Yay! At least I don’t have to inject myself with Warfarin, which stings like anything. The white blood count meds can barely be felt as long as you find a nice roll of fat to stick ‘em in!

Monday-Tuesday, Week 2 – By the start of Week 2 my energy levels have more-or-less returned to normal. Normal for a normal person anyway – perhaps about 75% compared to pre-chemo Gill, but that’s ok, although I sometimes have to sleep all of Monday if I’ve had a busy weekend. Enough to go climbing or do some weights exercises, long walks of an hour or more etc. Not quite enough for cardio exercise yet. However, this is usually the time my nose starts bleeding (not so bad as side effects go) and my mouth will have become quite sore (although again, I get off pretty lightly when you consider the long list of chemo side effects I could have!).

Wednesday, Week 2 – Wednesday is Oncology Clinic day, when I have to go to the Macmillan Centre and see my team – oncologist, pharmacist and nurses. We discuss any side effects I’ve developed in the past cycle, check all my internal organs are functioning properly and order my chemo drugs for the next Monday. So far my oncologist is impressed that I appear to be breezing through what he himself describes as “super-strong chemo”. (My oncologist is great. He let me get a tattoo the week before I started chemo, and his opinion on drinking is “have a binge if you want to see what it feels like! You probably won’t ever want to again, but hey – you’re on chemo so you’re at least going to need a beer every now and again!”) Oncology Clinic is almost always overrunning, so I get home pretty late.

Thursday-Sunday, Week 2 – Aaaaand… that’s about it. As the week goes on my energy levels get higher, although the white blood cell stomach injections give me back pain from Thursday onwards as apparently your white blood cells are made in the base of your spine. The nose bleeds and sore mouth usually start to tail off over the weekend, so that by chemo Monday I’m usually felling pretty good, and then the whole cycle starts again…

So, I hope that was enlightening as to what chemo is for me right now – basically, nowhere near as bad as I feared and I’m doing my best to take advantage of the good days! I’ve been feeling better and better ever since I started, which I hope is a good sign as I head for my mid-regime scan tomorrow. As ever, wish me luck dudes.

Edit – I actually got my scan results today and they show I’m responding really well to the chemo and the cancer is shrinking. Woop woop!

Learning to look after myself

I’ve never really paid that much attention to the idea of looking after myself. I’ve long been a burning-the-candle-at-both-ends workaholic who viewed rest as something other people did and that I needed only rarely. I haven’t had a holiday in years, and when I have taken holidays I’ve usually been doing something high-stress concurrently, like skippering a yacht, or producing an Edinburgh Fringe show. I worked night shifts to fund my way through my masters, catching an hour’s sleep here and there in whatever common room I could access that was quiet enough. I headed off to the Central African Republic to continue my PhD fieldwork five weeks out of major lung surgery. I’ve pushed myself, more and more over time, to be “that person” who does everything – works hard, parties harder, sails in the summer and makes theatre in the winter. And now, all of a sudden, I’ve had to stop.

A short walk in the sunshine on my first holiday in years.

And by stopping, I’ve discovered something amazing – self-care. You see, cancer makes your life difficult to predict – it’s a battle that you basically have no control over. People say things like “you’re a fighter”, but really it’s a matter of doctors putting chemicals in me and waiting to see what happens. I can’t help the chemicals other than to whisper softly to them “good hunting”. This week I wasn’t allowed the chemicals because my white blood cell count was too low. The nurse assured me that it wasn’t a matter of me pushing myself too hard the week before – it’s just the chemicals they’re putting in me are super toxic and sometimes my body needs a break. But the unpredictability of chemicals and blood cells and treatment regimes can be offset somewhat by the establishment of a predictable self-care routine. My entire life, right now, has become entirely dedicated to working out what will make me feel good from day-to-day, and then enacting that thing. It might be staying in bed and watching Game of Thrones, it might be going for a walk in the sunshine, it might be making myself a really nice sandwich. But whatever it is, I do my best to find a way to do it.

And I’ll tell you what, it’s amazing. Many people have commented on how good I look, how positive and upbeat I am, how I’m basically just myself despite the huge, scary thing that’s happening in my life. A huge part of that stems from my new found commitment to self-care. I’ve never felt so attuned to what my body is telling me about what it needs. Keen as I am to see people and get on with things, I’m learning to plan dedicated rest days into my life, to sleep when I feel I need to without any guilt, to take advantage of the Macmillan Centre’s amazing complementary therapy service. And it all makes me wonder why I’ve never tried to do this before, even in the most minimal of ways. How focused our society is becoming “that person” – the mythical person who does everything awesome going and never needs a break. How little time we plan just for working out what will make us feel good each day and then doing it without feeling guilty about doing something for ourselves. So take some time out today and do just that, I urge you. Especially if you’re a burning-the-candle-at-both-ends workaholic like I was. I wish I’d done it sooner! And while having cancer really super sucks, discovering the power of self-care has been really super awesome. It’s amazing what difficult diseases can teach you about yourself.

On Luck

Gill and elephantsThis is me just a month ago on my 32nd birthday, gazing out across the impressive Dzanga Bai at some 30 odd elephants splashing about contentedly in the mud. At the time I’d been waiting a week for my insurance company to arrange my repatriation home from the tiny town of Bayanga in the middle of the Central African rainforest, during which period I agonised constantly over whether the decision to abandon my work and return home had been the right one. I was worried I was being a hypochondriac, that I wasn’t exercising the kind of toughness necessary for my anthropological fieldwork, that I was giving up my last opportunity to get any really significant research done. As it turned out, I got out in just the nick of time – if I’d delayed even a few more days it could have been disastrous. In this, I consider myself to have been incredibly lucky.

It’s an odd thing, to stare both good and bad luck in the face at the same time and to wonder very seriously which of the two is on your side. Over the past few years I’ve proved to be a bit of a medical enigma – I’m a short, non-smoking woman whose lungs sometimes mysteriously collapse; I’m a 32-year-old who’s just been diagnosed with advanced bowel cancer, a disease that doesn’t normally affect people under 50. With regards to both these conditions, the only explanation doctors have been able to give me for why I’ve ended up with them is “just bad luck”. And yet, at the same time I feel like I’ve been extraordinarily lucky – I seem to have an uncanny sense for when I need to get the hell out of whatever remote part of the world I’m in and on a plane home. Which means I’m still here, and I’m still fighting on. I’ve seen some extraordinary things and had some incredible adventures over the last 32 years I’ve been drifting about the planet, and on the way I appear to have made the most amazing friends in all the cosmos.

I’m now reaching the end of my first chemo cycle. It was, thankfully, nowhere near as bad as I was expecting, but equally it’s just the beginning of a very long journey and I have no illusions that it isn’t going to be a tough slog whose ultimate outcome is also going to come down, at the end of the day, to a whole lot of luck. But whichsoever way that luck falls, in the meantime I intend to try and focus on whatever good fortune I find in the day-to-day as hard as I can. Sometimes, I know, that’ll be difficult to do. Sometimes I’ll feel abandoned by fortune and then in another breath I’ll feel like I’m wrapped in its arms. Because really, luck is just a narrative device that humans use to tell their stories, and I have a feeling I’ve got a whole load of stories in me yet.

Plot Twist

I’m just going to cut to the chase – last week I was diagnosed with cancer. It started in my large bowel and has already managed to sneak its way into my liver. Bowel cancer is 1) very rare in people my age, and 2) notoriously silent until it spreads and starts causing problems, which is why it hasn’t been identified before now. In my case the key problem was the near total obstruction of my gut, which has now been opened up again with a magic expandable tube called a stent. I had a lot of tests last week to assess the extent of the damage to my bowel and liver and doctors will discuss the results of those with me shortly. For now, I am being fast-tracked to chemotherapy; I will be on two week cycles of 2-3 chemicals for around 3 months beginning on 21st June with a view to shrinking the cancer as much as possible before surgery later this year.

I am, in general, holding up pretty well given the situation. Clearly I’m terrified, but medically I know I’m in the best hands possible and I have an amazeballs support network of family and close friends who are already looking after me really well. Like many things in life, being diagnosed with a rare cancer feels a lot more normal when it actually happens to you than you imagine it would, and so at the moment I’m focused mostly on the project management side of things – making sure I have an adequate supply of cosy nesting spaces, decent scifi and fishfingers is much higher on my todo list than indulging in existential crises. Hopefully I can keep it that way.

If you want to get in touch, that’s great and I’d love to hear from you! But please don’t phone – I find phone calls stressful at the best of times, and at the moment I am constantly on edge waiting for calls from the hospital about tests and things. Messages and emails are great (as are physical letters! See address* at the bottom!), but please don’t expect me to reply quickly, or at all – as you might imagine, I have quite a lot going on right now. A lack of response doesn’t mean I don’t appreciate you getting in touch, it just means I’m exhausted.

Similarly, if you’d like to visit me then by all means ask, but don’t expect a response straight away, or be prepared that I might say no. I am normally the kind of person who gets a huge boost from people being around, but I currently have no idea how chemo is going to affect me. However once I’ve gotten used to the cycles it’d be lovely to know who I might be able to persuade to join me for boardgames or Star Trek or short healthy walks in the park, etc.

If you want to get in touch but you’re worried about doing/saying the wrong thing, here are some articles about talking to/supporting people who are going through cancer and other big crises that I think are helpful, particularly the Comfort In/Dump Out Ring Theory:

http://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html#axzz2kF8iBw9U

http://www.salon.com/2011/12/13/how_to_talk_to_someone_with_cancer/

http://www.macmillan.org.uk/information-and-support/audience/someone-i-know-has-cancer.html#196874

Finally, if you have questions about any technical/treatment stuff, please ask Google and not me! If I have more information I will post it in my blog or on Facebook if and when I feel comfortable doing so. Depending on how I’m feeling I’m hoping to document a bit of what it feels like to go through chemo and everything else, but that’ll depend on my energy levels and motivation at the time. If I don’t post a lot, don’t worry! Again, I’m probably just exhausted. I might set up a Facebook page or something so that my above mentioned support network can help you keep tabs on me (gosh, the future, etc.). And speaking of that support network, if you do happen to know my housemates or my boyfriend or anyone who’s sat with me and waited for me in a hospital recently, then please remember that they’re also going through a lot right now and you should definitely buy them a gin.

Right, I hope this post has been informative and helpful, and that as I step out onto the big scary battlefield ahead I can count on your support as I aim to kick cancer in the balls as hard as I can. Thanks for reading.

 

*Address for postal correspondence: 568 Caledonian Road, London, N7 9SD.

Moving Forward

If there is one thing I really wish we’d had a class on when I was a fresh-faced, enthusiastic masters student three dim and distant years ago, it’s exactly how wrong fieldwork can go. They’ve introduced such a thing now in the anthropology department at UCL, giving post-field PhD students the opportunity to talk to those just beginning their MPhils about the moments they thought their research was scuppered – when war broke out and they had to be evacuated, when they spent months on end sitting around some major capital trying to get research permissions, when the day after they arrived in their new field-home the head of their host family suddenly passed away. I’ve heard UCL Anthropology is even thinking of introducing post-field therapy sessions for final year students – a bold plan that could benefit many an anthropology department across the planet. When everything collapsed for my own fieldwork last year – figuratively in terms of my research, quite literally in terms of my lungs – I quickly realised that I was far from the only who’d had cause to make use of UCL’s excellent Student Psychological Service. In fact, anthro students who haven’t had to hump some major fieldwork crisis are probably very much in the minority. But there’s a kind of machismo to anthropology that sometimes stops us being open enough about the difficulties we’ve faced. Even if ethnographic fieldwork and all its attendant disasters is something of a right-of-passage for the fledgling anthropologist, I don’t think that should stop us being honest about the fact that sometimes it just really sucks.

New year, new fieldsite - the Dzanga-Sangha special reserve
New year, new fieldsite – the Dzanga-Sangha special reserve

I was amazingly lucky last year in having a hugely supportive cohort of PhD student friends (not to mention a hugely supportive network of non-PhD student friends, colleagues and family) to grab my back when I needed them most. Equally, while having two major operations on my lungs was not exactly a pleasant experience, it did force me to take some time out from my PhD and get exactly the kind of distance and space I really needed to process what I’d gone through in the field – the frustrating mess of being an applied, “activist” researcher trying to push an agenda that doesn’t match up with local bureaucracies, the physical and mental hardship of dragging one’s poorly adapted, unprepared and heartbroken body across unforgiving terrain, the *millions of fucking bees everywhere*. When the year finally turned, and with my lungs successfully secured to my chest wall to prevent further collapses, I could have chosen not to return to the field – I have more than enough material, I think, to write up my PhD as is. But instead I’m penning this from the rainforest, in the Central African Republic this time, chasing a lead that I think shows far more promise for my work – that, as Viveiros de Castro would put it, of “the ontological self-determination of the world’s peoples”[1] – than anything I tried to engage with in Congo. And this time I have the luxury of approaching the field fresh from the lessons of last year – I’m cautious in my optimism, my deep enthusiasm for ExCiteS’ work is tempered by the experience of its messy nature, and I have a much stronger awareness than before of my own limits and need for rest. Physically I’m much weaker than I was when I hiked through the Lefini Reserve and the Ndoki forest last year – I’m only 5 weeks out of lung surgery after all, and still very much on the road to recovery. But mentally I feel more prepared for the field than ever, just by virtue of having encountered exactly how unprepared I really am. As ever, I’ll let you know how it goes.

 

[1] I’ll write a post explaining this soon, I promise 🙂

Making Mess

Success stories are a powerful trope of international development and conservation work. They structure the way NGOs, governments and companies engage with powerful donors and public opinion. They also smooth over complexities, efface failures, and ignore contradictions. They present ongoing situations as if they are done, dusted, and thus can legitimately stand as a lesson to others who seek to achieve similar goals. They clean up mess. But conservation and development work is all mess.

Making mess...
Making mess…

As my ethnographic work proceeds here in Congo, it’s hard to keep a lid on all the mess I encounter. As I sit in Brazzaville trying to make yet another workplan for the coming months that I know is unlikely to stick, I fear the mess may overflow and overwhelm me. It’s been there from the start, from the very first day I started working on Extreme Citizen Science, but it’s here – in the field, at the point of implementation – where mess makes itself most apparent. Success stories are powerful (particularly those that begin with failure) and certainly I’ve told my fair share of them. But I’m beginning to understand that without accounting for mess it’s impossible to make sense of what is actually happening in the complex, multi-layered, power-laden realities of development and conservation work, or the global industrial processes this work simultaneously denigrates and supports. If we are to be faithful to mess, and we urgently need to be faithful to mess, then we need to unlearn old narrative tropes and engage with something quite different. We need to learn how to tell, and we need to learn how to listen to, unsuccess stories.

This is a tall order in an industry dominated by one principle agenda – securing the next round of project funding. It’s a tall order in a world obsessed with the inspirational force of TED Talks, Disney movies and cheery motivational posters. It’s a tall order when the storyteller risks upsetting or offending friends and colleagues, and the listeners risk treating unsuccess as failure, which is quite a different beast. Unsuccess is not intended to be judgemental. It’s just a story of what is, on the ground, sur le terrain. A story of mess.

I’m still thinking this through, but here’s a (tame) example from my recent work. I wrote a blog post for ExCiteS about the potentials of using ExCiteS’ icon-based software Sapelli to support a group of community-organised ecoguards to collect data about wildlife and hunting activity in the Lefini Reserve. We piloted the system in the context of a research project, and the two ecoguards who participated were very enthusiastic about the possibilities. So far so successful. But what I left out of the story was that these ecoguards are supposed to be engaged in the same process as the conservation organisation that supports them – trying to stop other members of their community from hunting. This means that they are not only not necessarily representative of, but are often directly opposed to, the community at large – so what then for the radical community participation philosophy of “Extreme Citizen Science”? Furthermore, the conservation organisation does not have a government mandate that allows it to provide official support to the ecoguards – and thus the sustainability of the project is questionable and rests on political decisions being made at the national level. Additionally, there are some doubts within the conservation organisation as to whether it is strategically desirable to continue working in Lefini at all rather than focusing on “priority” landscapes where elephant poaching is a bigger issue.

There is worse mess here, but I am struggling to find a way to tell it. To be faithful to it I’ll need to weave narratives that may directly contradict the success stories my colleagues and I have told in the past. But if we are to make any progress towards the lofty aims of Extreme Citizen Science – to support truly community-driven, bottom-up processes of data collection, analysis and use – then however uncomfortable it is, these messy unsuccess stories will need to be told.

Finding My Forest Feet

The beautiful Lefini Reserve
The beautiful Lefini Reserve

The first time I ever walked properly in the Congo Basin rainforest was two years ago. I felt like a huge, clumsy elephant – although that’s a terrible metaphor because elephants are actually pretty competent at walking through the forests here and just smash apart anything that gets in their path. But I got my head and my arms and my legs stuck on bushes and twisted under branches and sucked into boggy marsh, and army ants kept running up my trousers and biting me, and I kept getting lost because I was dreadfully slow and always at the back of the group. I was hideously unfit at the time – I’d been working night shifts for two years to fund my way through the masters I studied for by day. Three months after I returned from Congo that year my left lung stopped working for six weeks, for no real reason the doctors could determine other than complete exhaustion. In 2014 I got fitter. I ran and I swam and I lifted weights. I had two functioning lungs. When I returned to Congo in January this year the people of Gbagbali – my favourite Mbendjele camp along the Sangha River – commented that when I first came to visit them I walked very slowly in the forest, but now they could see that I am much faster. I was pleased. I thought I was prepared.

I wasn’t.

Me at the end of the second day, looking the part at least
Me at the end of the second day, looking the part at least

The Lefini Reserve is in the south of Congo-Brazzaville – it’s a hilly savannah-forest complex where I was accompanying a researcher from Imperial and a team of ecoguards to map signs of wildlife populations and evidence of hunting activity. I have never in my life been more completely unprepared for the extremes of the terrain. From the marsh we crossed at the beginning where I messed up where to put my feet at every step to the long uphill hikes in the blazing midday sun to the swathes of grass and brush as high as my head or more that lashed against my skin as we hacked our way through, every step was a challenge. Each night when we made camp it was as much as my aching, shaky, dehydrated body could do to pitch my tent and force down some smoked fish and manioc (cooked by my incredibly kind and caring companions – I may not have made it through were it not for them). Perhaps normally I could have laughed it all off, but I was sad about other things going on in my life, which circled round my skull as I walked like so many vultures. When we made it back to our origin point after four days I wish I could say I felt an enormous sense of achievement. It was, I think, the most physically demanding thing I’ve ever done – and I’ve hiked a fair few enormous mountains in my time. But I picked up my emails and some of the other work I’m supposed to be doing in Congo had suddenly gone tits up (as stuff in Congo tends to), and all of the embarrassment and exhaustion and heartbreak and disappointment hit me like a wave. I sat on a ridge overlooking the beautiful Lefini River and I cried and cried.

 

Sometimes it’s time to power on through and keep on hiking. But sometimes it’s time to admit that you’re not, in fact, the female Ray Mears. Sometimes it’s time to return to Brazzaville, lick your (physical and mental) wounds and nurse your injured pride with beer and chips. As they say here, c’est ça, le terrain.

Local Contexts – Licensing and Labelling Traditional Knowledge

 

tk labelsI went to a fascinating lunchtime talk last Thursday given by Dr Jane Anderson, a legal anthropologist at NYU who specialises in investigating the relationship between intellectual property law and indigenous knowledges. In her work with Aboriginal communities in Australia, in particular with Aborginal artists, one of the key problems she came across was that current international intellectual property regimes fail to address the particular needs of indigenous peoples in relation to their cultural heritage materials. Where artefacts have been collected by colonial powers, or art has been photographed by Western tourists, or traditional songs have been written down by ethnographers (to name just a few examples of problematic encounters), current IPR regimes tend to assign copyright and ownership to the collectors and recorders rather than to the communities from which the materials originated. Such practices deny indigenous peoples any self-determination over the circulation and use of their heritage, and even where ownership over certain materials can be repatriated to their communities of origin, intellectual property law does not necessarily match up well with the contexts in which indigenous knowledges and materials are created and used. For example, within many indigenous communities there are items, traditions and songs that are explicitly gendered – however it is not possible to restrict access to materials by gender under IPR regimes.

To address some of these issues, Jane is collaborating with Associate Professor Kim Christen at Washington State University and Michael Ashley, Director of the Centre for Digital Archaeology at Berkley to develop a set of intellectual property licenses and labels that are more appropriate for use by indigenous, traditional and local communities. Inspired by the Creative Commons project, Local Contexts offers four Traditional Knowledge (TK) licenses, for use by communities who already own their content and wish to assign additional rules governing access, and thirteen TK labels, designed to tag content that is already considered to be in the “public domain”. The labels do not (cannot) impose any legal restrictions on the use and circulation of indigenous knowledge materials, but are instead intended as an “educational and informative strategy” which invite potential users to engage with the contexts in which traditional knowledge is created and shared. For example, they allow communities to highlight material is family- or community-specific, or gendered, or that should only be accessible to initiates, and to ask potential users to respect these traditional rules of access. The licenses and labels are currently being experimented with by communities who are engaged in managing their digital heritage via the Mukurtu content management system (CMS) – and what Jane has found is that communities are using the TK labels as a starting point from which to personalise the ways in which they wish others to engage with their digital heritage.

Local Contexts Traditional Knowledge Labels from Michael Ashley on Vimeo.

It was a great talk that sparked a lot of questions – not least how such a licensing system might deal with knowledge and practices that are contested or shared between different indigenous groups (as is the case with many of the dances and songs in the Congo Basin region where I work). Of course, an experiment like this will need to develop ways of dealing with the specificities of such cases as they arise and I will be very interested to continue to follow the development of both Mukurtu and Local Contexts as they are applied in practice. So far the principle users are indigenous peoples of North America and Australia and there is a clear bias towards technologically literate communities. However, as more and more regions of the world are opened up to the scrutiny of a global public hungry for glimpses of the “exotic”, the existence of an adaptable system for managing indigenous materials and knowledge that IPR regimes render into the public domain is likely to become increasingly pertinent even in less connected settings. It will be important, in these cases, not to repeat the mistakes of the past with regards to the appropriation of local heritage, and it is projects like these that may begin to provide a workable safeguard.

Worlds Collide

(Gosh, that was all getting a bit emo there for a minute wasn’t it? Like a fleeting return to my early naughties LiveJournal days. What’s needed here is some decent deconstruction to chase the melancholy away. I know just the thing…)

IMG_5519The tourists arrived in two open top safari cars, the sound of the over-powered 4×4 engines practically drowned out by the flickering of camera shutters and the wondering gasps of rich Western city-dwellers confronted by the sight of mud-brick houses roofed with leaves. They were bedecked in the greys and khakis and greens of expensive jungle gear bought especially for this short sojourn into the fringes of the rainforest, their necks adorned with high-end camera bodies attached to pricey glass. They descended, cameras glued to their faces, shooting wordlessly as curious villagers came to greet them. With some bemusement they were shepherded over to the village chief, sat by the remains of a fire in his deerskin chair, who proffered a hand for each of them to shake. Then they were shepherded back again, cameras still snapping, to a row of plastic garden chairs; fine luxury in this part of the world, laid out especially for them. They settled – each with one camera in their laps and one poised, ready, viewfinder to eyeball – to watch the singing and dancing that would take place in their honour. And not one of them had any inkling of the mess their fleeting collision with this other world had caused.

Visits to indigenous villages have become a staple of tourism in the so-called Global South, as sightseers from across the price spectrum – luxury travellers and backpackers alike – have proven themselves hungry for glimpses of peoples and worlds unlike their own. Such ventures are often marketed as alternative livelihood solutions for communities living in poverty – particularly in conservation areas where local people are no longer permitted to hunt and gather as they used to. Branded as “eco-” or “sustainable” tourism, the fluffy language in which they are couched for consumption by the globetrotting occidental middle-classes serves largely to mask the deep power imbalances and pernicious consequences that tend to permeate such projects. This was only the third time tourists had visited Mboka*, the most easily accessible indigenous village on the outskirts of the National Park where I’d been working – and just as on the previous two occasions, (and completely unbeknownst to the camera-laden Swedes and Americans), it had been preceded by several days of arguments, in-fighting and, sometimes violent, conflict.

IMG_5497The theory goes that tourism can generate a supplementary income for communities like Mboka, but it is precisely this income that lies at the root of many of the problems. Cash is something of a poisoned chalice in the rural landscape of Congo, where the economies of local and indigenous villages have only recently begun to monetise. Where previous subsistence practices, based on immediate-return hunting and gathering, had drawn on a cosmology that emphasised the necessity of sharing and ensured more-or-less egalitarian social relations between people, money has introduced alien concepts such as private property and the capacity to store and conceal value from others. All fairly well when the sums are small, but Western tourists become rapidly associated with untold riches that no one can agree on how to divide appropriately. To further complicate matters, the “indigenous people” that the tourists come to see are so entangled in discriminatory relationships with their agriculturalist neighbours that any money the tourists bring in is soon captured by local elites. And, when spent, it rarely goes on the schools and medical care that the tourists desire to provide, but more often on problematic consumables, such as alcohol.

The National Park’s social team are trying hard to work out how to introduce a tourism scheme that won’t result in rampant alcoholism and elite capture, however most of the proposed solutions are necessarily paternalistic and deny much self-determination to the indigenous populations in deciding how money earned from tourism will be spent. In fact, some suggestions that the population have made – such as corrugated tin sheets to replace the leaf roofs of their houses – have been directly denied, for fear that the tourists will be put off by such an “inauthentic” look. At the same time, concerns that if the tourists’ visits are not “structured” enough then they won’t feel like they’ve gotten their money’s worth are motivating Park employees to push communities into developing hierarchical organisational structures, and to “packaging” indigenous dances, songs, households and culture into repeatable, accessible morsels removed from their wider cosmological and ecological significance. This sort of approach can serve largely to exoticise and “other” indigenous lives in the eyes of those who come to watch, while at the same time rendering the actual practices on which the tourist-friendly versions are based things of a half-remembered past.

IMG_5499The irony of the whole situation is that if it wasn’t for the presence of the National Park then an income from tourism wouldn’t be necessary in the first place. While it was established to protect elephants, gorillas, chimpanzees, and other coveted species (coveted, that is, by foreign markets and conservationists, rather than necessarily by local people), the Park itself is one of the biggest drivers of the species loss it seeks to avoid. Indigenous people have hunted and gathered in remote areas of forest like this for thousands of years using sustainable practices that have ensured animal populations can thrive. However, the establishment of the Park brought tourists and management staff, and the tourists and management staff needed roads and a service economy. The roads make access easier for illegal poachers intent on feeding ivory-hungry Chinese markets. The service economy has prompted the development of a thriving bushmeat trade. Both hunter-gatherer and farmer populations are now denied access to large swathes of land, and therefore to the ability to move around as animal populations fluctuate. Formerly sustainable practices have been rendered unsustainable, and draconian enforcement measures used by Park-employed “ecoguards” mean that local people end up not just hungry, but often badly abused.

Short wonder they are wary of new livelihood initiatives the Park is bringing in; as our research assistant commented: “I think that the people here would prefer it if the white people left altogether and they were able to get on with hunting like they want to.” I’d be inclined to agree, if it wasn’t for the fact that in the face of the current global land grab the National Park is almost certainly the only thing keeping out forestry firms, palm oil companies, and now coltan prospectors. The Congolese government is already planning a new road through this region; when it arrives, tourism may be the least of their worries.

 

*I’ve used a false name, for obvious reasons. While my feelings about indigenous tourism and fortress conservation come across pretty clearly here, I have an enormous amount of respect for the National Park employees working in this context – they have a tough brief and not a lot of options in the face of global forces they can’t control.