defining needs ii: defining community

yeah, so, started the "miniseries" a few months ago when i had an office job in dc and was getting pumped to go to grad school. then didn't go to grad school, got a job in delhi, and have been somewhat busy/distracted since.

but! the job involves a lot of academic research, into the effects of various types of voter education campaigns in slums in india's capital city, which while interesting in its own right, has me thinking a lot about defining community. chris blattman in a (quote in a) recent post touched on what i am going to say baldly: identities, whether individual or group, are created by exclusions. this is true whether you're defining your own (i am this because i am not that) or someone else (they are that because they are not this).

the logical analogy at this point would be to say that identity:individual :: community:group (roughly--i know it's not perfect). but the problem is that looking at even individual identity, one "identity" is actually composed of multiple overlapping identities--loose affiliations with different groups (language, gender, region, occupation, political, etc.) or one's relation to others (mother, loner, leader, etc.). individual identities always, by definition almost, relate a person to other people around him/her.

it would be great if you could extend that to the group/community level, saying everyone sharing one particular identity (language, for example) is a community. two problems with that are that first, it's hard to say who "shares" a specific (in this case linguistic) identity--do you need to speak it from birth, speak it fluently, speak it predominantly, speak it most comfortably, speak it in a certain way (even ignoring the blurry lines between different linguistic varieties); second, this identity is just one of many that the individuals in this group may have--they may be divided by religion, income, nationality, race, gender, education, occupation, etc.

the largest theoretical "problem" (for me) with community, though, is the exclusionary action of this definition. dominant groups (eg, white english-speaking males in the US) usually have the luxury of having their community defined at the most basic level of societal structure, allowing them to exist as the "unmarked" or the "norm", thus discursively becoming the only "neutral" observers, and in many ways becoming the ultimate arbiters of culture (and politics, etc). "ethnic" communities exist often in order to preserve or promote their community in the face of the normalisation of the dominant group, but in this way often cause their group to become, by definition, marked and subordinate (or think of the rite of "coming out" in the gay community, by which one marks oneself as "not-normal", with the assumed sexuality being heterosexual in the absence of such a process. but i digress).

so communities are problematic--but why are they useful, and how are they used? for me, in my work, they're useful because they are a way of segmenting the mass of "everyone in the world" into discrete, manageable groups, setting boundaries to my work or study. by defining one group as the "target population" (ignoring for the moment the way in which that designation is made), you can set boundaries to what you will and will not work on, and with whom you will and will not work. by naming one group as the target, you implicitly place another group or groups out of bounds.

usually, these groups are recognized (by me, the person who has really no business being there) by self-identification--if someone says they're one thing, they're that thing. this is really a great and not-great way to do things. on the plus side, at least you're not putting people in boxes that they wouldn't put themselves in (as long as you're not pressuring them to choose something when the distinction is meaningless to them--see the colonial history of nigeria (or a lot of the rest of africa) for examples of this).

on the negative, it takes a lot of time, and a lot of talking to people, and usually a lot of dead ends. i worked in pune for a couple years, in one slum, and with only two communities. in the end, i got to know pretty much everyone living within a couple of kilometers of there by sight, and got to know the boundaries between different self-identified groups there. but, i don't know the right word for these "groups" in marathi, hindi or even english. the point is, i couldn't go in there and simply ask "to which group do you belong in regards to x dimension?", but rather relied on knowledge passed to me from my colleagues and months of face-to-face discussions in homes, getting to know genealogies, accents, naming patterns and the historical memories of people. on top of that, there was never (ever) a clear and all-encompassing consensus on who was in one group and who was in another. sub-groups, groups that may or may not have been the same but broke off in the past, personal feelings, and the context of the conversation always affected answers, and couldn't really be taken into account.

for my job now, we're working on a "complete" descriptive accounting of the life of the urban poor in delhi (a city of between 12 and 15 million, depending on who and how you ask). this will take a lot of surveys, a lot of pseudo-ethnography, and eventually an identification of group "informants" to answer questions about the "community" as a whole. i've yet to wrap my head around a decent way to decide who is able to speak for a community, and apply that in 100 (at least) different areas of the city. defining a community is difficult enough, especially given that different overlapping communities may form for different purposes--linguistic communities of migrants living near one another, or a community of women who access services at the same community centre, or a community of men working at a cluster of mechanics shops, or a religious community comprised of persons speaking many different languages.

my colleagues have often said that this is going to be "fairly easy, if time consuming", that we can go into an area, generally ask around for the "leader", and once a consensus begins to emerge, interview that person. i'm afraid that that approach is going to leave out a lot of very interesting variation, especially if we prompt people by giving examples of leadership (in political affairs, for example).

at least that's a bridge to cross when we come to it.

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related posts:

defining needs i: defining poverty
Burn it to the Ground; or, Defining Needs: The Miniseries

Defining Needs I: Defining Poverty

So the first definition that needs to be dealt with (and the one that started me on this trail) is "poverty" (which I'm taking to be the noun form of the adjective "poor", without significantly changing the meaning). So it's not entirely easy to explain my thought process as I fell asleep last night, but it started at this post over at Alanna Shaikh's Blood and Milk blog, specifically the last comment (as of this writing) about the "conundrum"--giving Knicks jerseys to kids at refugee camps can be exploitative and degrading, but so can telling "poverty tourists" (which, already, I'd put right up there with the Smithsonian's placement of an exhibit on "African culture" in the natural history museum) not to share food or even eat in front of residents during their tours. So, basically, distributing excess can be/is problematic as can be/is not distributing it (even though you're trying to avoid the first problem--and round and round we go).

Stepping back, you can see this is all based on a certain definition of poverty as a lack of resources (whoah that was a jump, but stay with me here). We (you know the "we", us rich, usually white, often male people who are almost invariably healthy citizens of countries in the global north) shy away from both of these issues because it makes us uncomfortable (or, maybe not uncomfortable enough) that we're forced to dehumanize other humans in order to address their needs (as we perceive them) for more resources--they lack things, we should therefore give them things, but that causes problems, and therefore we feel bad either way. Still with me?

So yeah, I think the "poverty is a lack of resources" or even "poverty is a lack of access to resources" definition is somewhat problematic. I generally prefer a definition (that I by the way did not come up with, but cannot for the life of me remember who did, so I can't be a good person and correctly cite this) that states "poverty is a lack of freedom". "Freedom?!" you say, "But, doesn't that mean youre some sort of crazy Bush-y neo-imperialist neo-con?!" My response there would have to be a polite "No, and I'm not even a libertarian".

So what's up with that? Basically, poverty often (always is such an ugly word) stems from a lack of freedoms--freedom to live somewhere in peace, and freedom to move in search of greener pastures; freedom to eat a healthy diet, or access basic (or even not-so-basic) medical care; freedom to send your kids to school, and to work in a dignified and economically-rewarding way; generally the freedom to live or die where, when and under those conditions as you see fit. Lack of freedom is both a symptom and a cause of what we call poverty, or I think it can be stated that lack of freedom begets more lack of freedom, in a self-perpetuating cycle, and in many ways can be seen to be synonymous with poverty. Handily, lack of resources is one (but certainly not the only) cause of poverty, which means yes, at least not all is lost with a lot of current development-think. However, other possible causes of poverty (via lack of freedom) are (in NO PARTICULAR ORDER):

• Being a woman
• Being not-white
• Being born on the wrong side of an imaginary line
• Speaking the wrong language
• Believing the wrong creation myth
• Juxtaposing your sexuality, external genitalia, manner of dress and/or manner of expression in a way that other find unappealing
• Otherwise being defined as "not normal"
  
• Et cetera, et cetera, et depressing cetera...
  

The best thing this definition gives us (again, us rich/white/healthy/male/northern folks) is that we now have a way of addressing poverty without eternally fretting over whether to give or not to give. Of course you assist financially where that's one of the limiting reagents in producing more freedom, but there are other things that need to be addressed as well, some individually, some locally, some nationally, and some globally. Of course, did you ever think this was going to be easy?

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Related Posts:

Introduction
Burn it to the Ground; or, Defining Needs: The Miniseries

Burn it to the Ground; or, Defining Needs: the miniseries

So I need to write a series of posts about my own process (which I'm trying to go through again, right now) of defining the place of an international NGO in a poor community without defining said community as needy or said NGO as some god-like expert figure. Obviously, that process starts with a definition of the terms I just used ("community", "poor", "expert", "needs" and "place" are gonna be key words here, since I'm pretty OK with the standard definitions of international and NGO, or at least, OK enough that it's not going to come into play here).

The partial disclaimer to this is that I'm working with a start-up NGO that's based in the US and India (unfortunately, I'll bet you can already guess the dynamic there), and specifically thinking about one community in one slum in one city, and I've not decided yet whether I can name any or all of them--at the very least, please assume there's a lot more concrete thinking going on behind the scenes than you're going to see here. So, yeah, quick update about what's going on, and now it's time to actually think.

it's ok, just blog it out (health plan edition)

having issues coming up with this program plan for a new ngo...hopefully writing some notes here (and eliciting comments?) will help me put my mind in order.

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in case you don't know me or know exactly what i've been up to, after working for about two years in pune, india, studying quite a bit of public health stuff (mostly independently) and reading too much, i'm working with a friend/former colleague to create an ngo in pune, bombay, kamshet (sorta...it's near lonavala, in the mountains halway from bombay to pune) and possibly eventually up in gujarat to work with members of criminal tribes (mostly the waghris, though expanding from there) who, for a number of specific historical circumstances, are extremely well excluded from pretty much any government assistance. not necessarily the poorest of the poorest of the poor, but definitely up there, and since we see this as primarily a case of lack of access, hopefully this can be worked out mostly in one generation.

so, in broad strokes the organization will be concentrated on education, health and community organizing (not necessarily in that order). education will be a serious bolstering of the education of kids attending govt schools (4+ hours of trilingual tutoring each day, pre-school, etc.), health is working out really basic stuff (childhood diseases, diabetes, pre-natal care, etc.) with a special concentration on tb and mdrtb (something i saw a disturbing increase of over the spring of 2009)--seriously working with the govt rntcp, identifying possibly resistant cases in the surrounding slum community, testing and treating with as little delay as possible. might end up opening a lab (or three) for this in the future depending on cost/benefit analysis, and definitely doing a lot of the DO half of DOTS, which the govt basically ignores. community organizing, though probably not the best or definitive term for this, will be concerned with supporting self-help groups, microfinance and getting legal documentation/representation for members of the community (caste certificates, ration cards, possibly unionizing to protect their employment from the slum "development" plans, etc.).

while i recognize it's kinda a dumb thing to open up a new "development" shop, especially in this economic climate (uh, or just in general), all of us working directly on it (one american, one brit, two indians from pune) have significant ties to the community which we hope to serve, speak the three languages which are most necessary (english, hindi and marathi, and we're working on gujarati), have good relationships with similar orgs in the general area (actually working to set up a health centre/program for an allied organization, hence the thing in kamshet), and generally recognize that this is a community which has specific needs (as they've enunciated them to us) which aren't being met by anyone in the area. so...yeah, there's my little defensive paragraph.

me personally, i'm going to be bouncing back and forth from washington to london to pune/bombay the first year, attending grad school in london, fundraising like a madman in the us and developing plans with local staff/community members to be implemented in my absence (in the areas we know best, namely pune), and then work on expansion to bombay upon moving somewhat permanently to india july 2010.

so there's that, now what will this health program be?

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first order of business in health is to deal with primary care, specifically for kids and pregnant women, in an organized and systematic way. best way to do that would be to work through community health workers (CHWs) who could help them access mostly the government services that would be needed--pre-natal care, reminding about vaccination schedules, going with them to different hospitals/ngo offices to get services, and advocating on their behalf to doctors (perhaps one of the biggest barriers to healthcare in the area, ugh). they would be caseworkers, service coordinators, instructors and very basic healthcare providers--giving first-aid, recognizing when more care is needed, and generally checking in on people as needed.

we'll have a part-time doctor at our centre(s) (in pune to start, expanding in 6 months-1 year to bombay, then 2-3 years up to gujarat, somewhat north of ahmedebad, but i cant remember the name of the town right now) who will provide somewhat specialized primary care (prescribing antibiotics only when needed, checking in with diabetics, etc) and medical guidance for CHWs and other staff (when something comes up that nobody recognizes, where to go for specialized care, etc.).

we'll start work on health education in the realm of nutrition--promoting good foods (drumstick, yeah), talking about equal food distribution within a family, talking about practices that should be minimized (tobacco use, lots of chai especially adolescents who are kinda nuts in this area, eating crappy food as opposed to eating cheaper, more nutritious food at home--this will also have a lot to do with women's groups/women's empowerment, and will work closely with the organizing program in this area), that kind of thing. to expand from there to substance use/abuse, sexual health (female AND male), community clean-up campaigns during the monsoon to combat malaria and diarrheal diseases, all that. a lot of that is going to be fairly indistinguishable from the community organizing programs, but that's kinda ok in my mind.

tb will be sorta a strange-looking outgrowth on all this community stuff, since it doesn't make sense fighting tb in one small (~400 people) community and ignoring the entire surrounding slum. so we'll be working with the local govt tb clinic, which blatantly doesnt do the DO part of DOTS at all, to do real proper follow-up of (all? just some? this is starting to sound too ambitious) tb patients in the area, hopefully preventing a lot of acquired resistance and fighting (on our own dime, unfortunately) primary resistance, since the govt blatantly denies its existence in the rntcp plan. that's going to mean a LOT of foot work, carried out primarily by specialized CHWs from around the slum, and lots of culture/sensitivity testing and sometimes providing a lot of expensive medicine.

the point of all the expansion is to work continuously with the waghri community across the main areas in which they live (they're semi-nomadic), so that treatment and education don't have to stop when they go to bombay or the village for two months. we'll have a lot of coordination between CHWs across all sites (who will most likely know each other anyways, since this is a very closely-related community), and managers at all centres, to ensure that nobody falls through the cracks like they have in the past.

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alright, that's my super-short description of the program in my mind, hopefully now i can write that in a more detailed and even somewhat professional way in the actual plan. i havent included any specific targets or evaluation rubrics, which definitely needs to happen. what else am i missing? what is just plain dumb? thanks for your help in advance.

What happens when you can't get your ideas straight

So, it was recently brought to my attention that the philosophical foundation that I’ve based my health program on is not actually one, but two separate ideas. So now I’m all “Fuck, what do I do?”, and meanwhile we’ve got patients/clients/community members/partners (what do I call them? That’s a whole separate can of worms) who continue to place demands on us, and I’m not entirely sure of what I’m doing.

So, to start with, the idea that I thought my program was founded upon was the idea that health (including healthcare, medical treatment, health education and, broadly, life itself) is not a commodity to be bought and sold, but rather is a human right. Therefore, access to high quality healthcare should be universal and have no regard for income, class, language, race, etc. And in the beginning it was good, and it all seemed so simple.

But then I found myself writing project descriptions—for grants, for the website, for newsletters, for individual donors. And I didn’t notice at the time, but I subtly shifted my writing and speech to the language of access. I wanted to increase access to medications, to medical treatment, to prevention programs, to concerned and genuinely compassionate doctors. Beyond generally believing that this was a good model, that this could significantly improve health outcomes, I think I did this as a way to water down my ideas about universal healthcare, as a way to make them palatable to donors and generally to the people whose support I need in order to reasonably (and by reasonably, I mean, “within my small organization’s budget”) make a difference in the lives of the people I work for.

Selling out, watering down my philosophy, I know. I’m not terribly proud that I would adjust something so basic as the reason that I do the work that I do so as to have more access to money, but hell, at least I’m honest about that.

Anyways, so, the thing is that generally these two ideas work fairly well together. The community we work for is marginalized, without access to health care, and in many ways shows a higher prevalence of a number of diseases because of this lack of access. Our record has generally shown that by increasing access to prompt healthcare, we’ve been able to (for example) reduce child mortality to zero (since mid-2007, where previously most women tell stories about at least one or two children dying) and successfully treat all new cases of tuberculosis, slowing the spread of the disease and decreasing the severity and length of morbidity. So far so good.

Our work has focused mainly on providing intensive follow-up, ensuring doctors and health institutions treat our patients respectfully and fairly, despite linguistic and socioeconomic markers which clearly label our patients as the migrant poor, and providing any necessary treatment. Notice, the first two go along with the “access” focus, while the last generally fits better with the “universal healthcare” aspect of my philosophy.

Where these ideas stop getting along is when we move to the borders of our target population, and begin working with the less poor, usually from other neighboring communities. Along these margins, access to healthcare is spotty, rather than completely absent. People will come to you with reports showing regular blood sugar testing over the past five years, with a few notable gaps, and ask for free testing and treatment for their diabetes.

There are two things you can do here. First, if you were strictly following the dogma that healthcare should be absolutely universal and free, regardless of ability or inability to pay, you would of course provide free testing and treatment. However, if you were looking at this from the perspective of providing universal access, you would see that these people already have some access, the way to ensure steadier access is to provide limited assistance, perhaps for testing or treatment, so that the family, with a reduced burden, will be able to consistently provide the rest.

So that’s what I did on Wednesday. Sounds eminently practical, and in an imperfect world of finite resources, where I work for a small NGO instead of running the world government, it’s probably the best I can do. I can’t, at the moment, handle another full-on diabetic patient (with testing, follow-up, home visits, doctor visits, and paperwork tracking prescriptions) and my organization’s modest budget will be quickly tapped out if we get in the business of giving free medicine to everyone who can in fact afford to buy it themselves. But it always feels shitty, turning someone away because they earn too much money.

I could now go on for a while about a few more things this brings to mind: first, whether we are, by giving medicine and healthcare away for free (but paying for it ourselves) are in fact making a firm stand about the universal necessity of free healthcare, or if we’re just buying into a system that we can’t see a way out of; second, whether, in the context of limited resources, if paying for a prescription of insulin, for example, should fall on the patient, if they are able to pay, or should always fall to the party better able to pay (in which case, it would almost always be the NGO); and finally, if it even makes sense to speak of the “context of limited resources” in a world where most infectious diseases and many chronic diseases would be easily managed by a relatively small redistribution of the world’s wealth—in which case, it might make more sense, then, to stop this “on the ground” work altogether and work only on the side of forcing or coercing a greater redistribution of resources.

But those are questions for another day. As always, I need to get back to the Sisyphean task of improving health, and making do with what we’ve got.