The right to access information is universal – and yet, despite the possibilities that technology and social networks offer to create and distribute content, relevant and reliable resources on sexual and reproductive health are still limited, and hard to find. At Stories to Action we want to authentic and accessible resources on sexual and reproductive health and rights that is, especially relevant during the ongoing COVID-19 health crisis. And today, you’re in for a treat!
We caught up with Ilana Fried (she/her/hers), who is the founder of Gynopedia, an open resource wiki providing practical, stigma-free information about topics such as birth control, the morning after pill, STI tests, menstrual products, gynecologists, obstetricians, prenatal care, abortion access, crisis support, and more. Gynopedia offers you the option to search for information by country or city, and you can also contribute to help others.
We discuss with Lani the value of such a resource, and the importance of collaborating to make relevant information accessible.
Welcome Lani! Can you tell us a little bit about yourself and Gynopedia?
My name is Lani Fried, I am the founder of Gynopedia. The reason why I started it, is because I needed it! I’ve had different points in my life where I have lived in different places or I’ve travelled, and I’ve needed to get this information but it was really hard to get. The specific time I decided to start it was when I was going to backpack in different countries in Asia, and I thought: ‘ I bet all these different countries have different policies, different laws, and I don’t know how I’m going to access different things long-term, like birth control or if I wanted to get a gynecological exam, or whatever may come up’.
I was really into open source software, and wikis, because I loved that they were grassroots, had people just sharing information, it was very direct where anyone could just edit and add information. So I thought – if I created a wiki of this stuff, then maybe people could share information and it could grow organically over time. So that’s when I created it: I was on the road myself, so it was launched out of a hotel room in Hanoi!
'The reason why I started it, is because I needed it!'
Amazing! Can you just clarify what a Wiki is, because what I think of when I hear Wiki is Wikipedia – is that the same thing?
Wikipedia is a wiki, yes! In simple terms, wikis are where usually anyone (although sometimes they are closed) can edit. For example, anyone can edit Wikipedia – you can edit wikipedia. Similarly, anyone can edit Gynopedia.
Overall, I think the beauty of wikis is that it is so self-defined. Let’s say there is something on the page that is missing that you think is important – that is something you can add. All the edits are publicly viewable. If you want to see me as an editor, you can click on my username ( which doesn’t need to be my name so it is anonymous)and see all the edits I made. Also, all the edits on a page are shown and you can actually see all the edit history.
That is a big part of the philosophy behind wikis. The idea is that everything should be out in public so we can share information and be sources together. That’s what helps make all the content better.
So, in the same way that anyone can contribute to Wikipedia, anyone can contribute to Gynopedia too, but, specifically the goal of Gynopedia is to share information on Sexual and Reproductive Health and Rights, is that the case?
Yes, exactly. So whereas Wikipedia and a lot of other wikis have a very general area that they work with, Gynopedia is focused on sexual and reproductive healthcare around the world. Particularly, through three lenses: There is the Rights and History side of it: understanding policies, laws, how things have evolved or changed over time both in the people and cultural sense. Then there are the nuts and bolts of how you get services – the What to Get and Where to Get It section. Lastly,there is another section for Costs, and how people typically pay for things, if there are things like low-cost or affordable options.
'[....] as someone who does a lot of research in this space, this is tough work! There is a lot of information; laws and policies are always changing.'
One of the things that we at Stories to Action find so interesting about Gynopedia is that your overall mission is to improve access to information. So, stepping away from Gynopedia specifically and just looking at life on Earth these days – why do you think that there is such a need for access to information on sexual and reproductive healthcare and rights? Why do you think it’s so difficult to find information on these topics?
First of all, I think there is the general stigma and shame. So many people, particularly many young women, are raised to not discuss their bodies and the more intimate aspects of their health experiences and their sexual and reproductive health care. This is something that happens globally, and in that sense, people are also scared to consult their local communities because they may be judged. So even if someone is based in their local area and they might know where to go, there still might be the barriers to access healthcare. This could be amplified if you are living in or travelling to a place that isn’t where you are originally from. So, all together, the stigma and shame of talking about these things can make it a bit more tough to not only access this information, but also to see a large amount of content being produced about it.
There are also policies and laws. Many countries have laws that either ban certain forms of sexual and reproductive healthcare, or have laws that are designed to make this care really hard to access. So this also means that people who may already be disenfranchised may then experience even more roadblocks in getting this information. So there are systematic things that are set up to make this difficult too.
And finally, as someone who does a lot of research in this space, this is tough work! There is a lot of information; laws and policies are always changing. In part because it’s so political and personal for many people. So you have to stay up to date on things.
I think all those things combined might contribute to there not being as many resources as there really should be, but it’s really important stuff, and I feel really honored to be able to do it.
'To me, all this means is that this work is really important. Especially in times when people are experiencing greater hurdles to access resources - I think resources online that may help folks at least identify where they may be able to go or what next steps they can take, can help bridge that gap right now.'
From a Gynopedia perspective, and from your personal perspective, how do you think COVID-19 has affected young people’s access to this sort of information?
In a really general sense, what we’ve really seen with COVID-19 is that forms of inequality,and disenfranchisement and oppression that were already occurring before COVID-19 are so much worse now in these times because so many people are experiencing greater forms of lack of access, lack of opportunities, things being closed down, staff being cut in a lot of places where people may have previously gone to access services, forms of transportation that were previously more commonly available being cut down as well, etc.
From the sexual and reproductive health lense, this contributes to, people being at a greater risk of not getting the services they need. Unfortunately, we’ve also seen an increase in domestic violence globally because people are stuck at home more and are not able to find other places that are safe for them to be instead.
To me, all this means is that this work is really important. Especially in times when people are experiencing greater hurdles to access resources – I think resources online that may help folks at least identify where they may be able to go or what next steps they can take, can help bridge that gap right now.
Can you share an anecdote of Gynopedia’s potential to impact people’s lives?
While a lot of stuff on Gynopedia is more direct information – what the law is, how to get something, etc. – there are also some personal testimonials that are shared on accessing healthcare in places like Turkey, Thailand, and other countries. Some people directly wrote on Gynopedia. Others wanted to have an extra layer of protection and privacy, they maybe didn’t feel so comfortable directly adding them. So they email me or contact me on social media, talk with me about their experience and we find ways of getting their story online.
While there aren’t a ton of testimonials, there are some. I really feel like they add so much to the pages when they are there. This is for a few reasons: Firstly- a lot of these topics are taboo for folks, so when there are stories of real people and their experiences, it helps demystify their experiences a little bit and normalize them. Secondly- it’s really powerful because, when people want to share their stories, there is a sense of love and trust in others. In a way, and wanting them to have information, not for any monetary reason or personal advancement – but just for the desire for other people in the future, or other generations after this person to have an easier experience than they did of knowing what’s available to them and how to get what they want. That to me helps solidify why I do the work that I do with Gynopedia.
But, frankly, any time someone edits or someone shares information, I’m really touched. On the sharing information front – I’ve done a lot of outreach over the years on social media and asked people for information to add to Gynopedia. So some people share information with me on other channels and I use that in my own research as well, because I understand that not everyone is going to feel comfortable editing a wiki right away. I actually think it’s easier than people realize to edit, but I have no problem at all connecting with people on other channels, getting the information, and helping add it either with them or just directly myself.
'That was an amazing moment in many cases: where I felt that I need to report on what the “official” thing is, and the reality that people are telling me. .'
What’s the most surprising piece of information since you’ve launched Gynopedia?
I think a lot of time we think about surprises, it’s stuff outside the context that we came from. So I’m American, I grew up in California. One thing that I knew a bit about through my personal experiences and travels –but it became so much more of a reality– is how, whatever is normal to me and how I grew up, and ideas around what’s accessible, what’s legal, how you access things… it’s really just my context. In every other place, it will be totally different. That’s one general thing I’ve learned.
Also, the difference between what is technically on paper and the reality once you walk into pharmacies and clinics, really varies from country to country. So, some things I was doing when I was starting up Gynopedia and doing research is that I started up researching places I had lived in or spent time travelling in first, because I felt more comfortable working in that space for research.
But then I started branching out to places that I didn’t know as much about, but I really felt that the information was important to get, because there wasn’t that much of it online. So I started looking at the time at these official reports from these major agencies. And then what I would do, because I know that’s not the complete picture, is I would reach out to communities online on social media, and I would say, “This is what I’ve read online about how you access this, or what typically happens when you try to look into this”. And people would say, “That is not the reality”. That was an amazing moment in many cases: where I felt that I need to report on what the “official” thing is, and the reality that people are telling me. Because I think both are an important picture for people to know. So that stuff I think added a lot to the dimension and the strength of Gynopedia pages. It’s something that, when I research, I’m very aware of now – getting both of those sides.
How can our listeners best get involved?
So there are a few ways to get involved. Everyone who edits, including me, does it on a volunteer basis. So you just look up a place that you want to edit – it can be a city, it can be a country. Once you get to the page, you look at the top right of the page whichit will say “Edit”; click “Edit” and a lot of time it will look like a Google Doc, or a Microsoft Word doc, and you can start editing. Whenever possible, we would love for you to cite where the information is coming from. So there is an easy way for you to cite references too. We have a full guide that goes over how to edit.
But overall it’s really easy – it’s much easier than people realize! Once you have your edits saved, they will be moderated, just to make sure that they aren’t spam or vandalism. If they look good, and it’s reliable information that can be useful for people, it will be officially up on the website and anyone else can come and look at that information.
Another thing to add – there are many more people who read Gynopedia than edit Gynopedia. This is normal for all wikis, but I think there is another reason why. Wikis typically have much much more male than female contributors. Wikipedia for example is overwhelmingly male in contributors – getting women, especially young women, to edit wikis, is a challenge. It also means that representation of these voices and these experiences is super important… so by editing Gynopedia it helps fill in knowledge gaps that are critically underserved online, and any information you share is super super important to folks. I really encourage- if you want to edit Gynopedia but are not sure where to start, reach out to me on social media or email [mentioned below]. I’m super super happy to help people.
To check out Gynopedia:
Visit: www.gynopedia.org
Instagram: @gynopedia_global Facebook: @gynopedia Twitter: @gynopedia
Email: gynopediawiki@gmail.com
Listen to the complete conversation here: