I suspended my work as an economist to, among other things, become the Programme Director of an NGO that I helped found, called the Women's Health Advocacy Network (WHAN). I sometimes get the sense that some people (apart from my family and close friends who are my biggest fans and think me something of a superstar, as I do them) don't understand that: they don't understand creating something because you think it should exist, because it is necessary. The conversation often goes like this:Person: So what are you doing now?
A_D: I'm a writer, and I work with an organisation called WHAN - Women's Health Advocacy Network.
(The writing part does not register at all. I might as well have said "Oh I'm an eater...and a part-time cougher." So they just gloss right over that part to the other thing that sounds more like a job, with acronyms and such.)
Person: Oh! And whose company is that?
A_D: Well it's not really a company. It's an NGO that looks at issues of women's health and sexual and reproductive rights in the Caribbean, and educates women on their patient rights...how to be agents in their own health care.
Person: Right. And who runs that?
A_D: Well I do. Along with some other very bright women. We started it.
Person: Yourself? But who pays you?
This is where people start to look skeptical and confused. They seem to be puzzled by the notion that I could have the audacity to be dissatisfied enough with the way things are being done to get up off my ass and do something about them myself. They apparently expect me to take a regular job like everyone else, and then spend all my time complaining that I had to wait two hours in the waiting room at the doctor's office, and then another hour waiting naked on his table, after which he spent 30 seconds looking at my vagina and zero seconds looking at my face. Or they expect that if I step out on my own, it should be because I've built an online business or invented some device that I can hawk on QVC, which - don't get me wrong - is never out of the question. Or they also expect that WHAN must be a little group of forlorn women who park our behinds in front of supermarkets clanging our tins for some pennies, rather than the board-run, non-profit corporation that it is.
Now there's nothing wrong with a 'regular' job. I had one, and many people I know have one. In fact, I have one now, it's just that I created it myself because it is necessary, rather than waiting for someone else, someone presumably with more power and influence, to create it and then deign to give me a job. I've decided to first earn - through work I've previously done - and then own, my power and influence. And to seek to grow it on my terms. And also to help other women own theirs. Because that attitude that leads people to believe that I don't have the right to get up and do for myself, as my mother would say, is the same one that has women believing that they don't have the right to demand to be listened to by doctors, and to be treated with dignity and respect. It's the attitude that says that as Caribbean people, as Black people, as women, as Black, Caribbean women, we should only be takers of what is given to us: takers of someone else's job that they've created and offered, takers of someone else's economic policies, takers of someone else's health care that they administer in the way they think we deserve.
I grew up in a time when our mothers were so pleased to be accessing free government health care, that they saw doctors and nurses as gods, and seemed afraid to question them, in part - and this is true of most societies - because they had knowledge our mothers did not have. But they were also afraid to challenge them lest they withhold their care, time and medicine, which many of them doled out as if we were begging, as if it was their own to control, and not the state's. As people have started to do better, and private, paid care has become the standard, that attitude has been slow to change on both ends. Many of us still believe that we're lucky to be sitting in that doctor's office, so we'd better shut up, nod, smile, and try not to cause any trouble. And many doctors still act as if they are gods come down from on high to save the stupid natives from themselves.
Well that attitude is not only annoying as all get out, but it at best potentially delays healing, and at worst, kills people. WHAN now focuses very heavily on HIV/AIDS and other STIs; sexual and reproductive decision-making including abortion; and violence against women. But we were thrust into existence on the basis of patient rights and education, because I, for one, was tired of the assumption on the part of doctors that I had nothing at all to contribute to my own health care, and tired of hearing all the stories from my friends. One of how a doctor failed to diagnose her breast cancer because he saw she was in her thirties and therefore dismissed the lump she had felt; another who eventually almost committed suicide because when she approached her doctor about post-partum depression he asked her why she couldn't just be happy, she had a baby now, and why couldn't she just get over it. And yet another who had to beg her doctor for a prescription to help relieve the symptoms of her genital herpes. Because he said it was no big deal, it's just a sore, and the medication is expensive.
I could go on and on and so much further on. And I know people will sing the old song about patients not being knowledgeable, so doctors assume a blank slate in approaching treatment. In my experience, some doctors don't assume a blank slate: they assume a stupid one. And there is always knowledge to be had from a patient if you use your limited time wisely to get it. In any event,WHAN seeks to work on both ends of the relationship, but primarily to bolster patients' awareness of their own knowledge gaps, to help fill those gaps, and to give patients the tools to make their doctors fill those gaps. You have to know what you don't know, and then you have to claim the right to find out. It is for all these reasons, and so many more, that WHAN exists, works, and grows every day.
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