Accessibility


While I’ve long been interested in Cochlear Implants, a combination of consistently reading Mel Chua’s blog and my ongoing fights for space for visual expression on Wikimedia Commons has reinforced my investment in accessibility. The more ways we express ourselves, after all, the more chances we have of being understood.

While it’s great to be aware of a need to become more accessible (see Benetech’s Diagram or this talk at Cascadia.JS by Alex Qin), it’s a bit more difficult to figure out if you’re “doing it right” when attempting to become more accessible. I have the terrible habit of adding in footnotes, or of linking things thoroughly, which can disrupt the text-to-speech experience. Sorry, everyone.

The most basic step I’ve taken is adding the “Accessibility plug in” on WordPress. Then, based on feedback from Twitter, running Apple Voice Over, which shows I’ve got a long way to go, but it’s also far better than it was in the past. I now think I get things just well enough to realize when I’m making layout choices balancing visual appeal and audio accessibility.

I have started taking audio recordings for some of my entries, and I’ll continue to slowly flesh this out. Additionally, some image descriptions are now far more detailed and… poetic?… than they have been before, as inspired by discussion with Diagram at Aspiration’s DevSummit. If you have requests for either image descriptions or audio files, please let me know. This has the added benefit of reminding people there’s a real live person behind the entries on this blog, stumbling speech and all.

But I still don’t know if I’m “doing it right.” How do I find out? I feel strangely like someone stumbling on social justice… is it on people already marginalized to lead me to doing things less wrong? Regardless, I’ll keep bumbling along on my own, open to learning more.

You belong to society

I’ve been unable to continue ignoring a notion that most people I see in online debates about gender1 carry, which is that those in these debates do not think they impact society, and subsequently have no individual responsibility towards it. It is simply a soup of which they are a part, where they are a stone — immutable to the broth around them, of no consequence to the overall flavor.

Let’s talk about emergence, here from the Complex Systems perspective, as the interaction between the parts and the whole. “Can’t see the forest for the trees,” as not being able to see the big picture because one is so focused on the next-scale-down of units (trees), despite these composing the next-larger-up scale (forest). Each has different behaviors, which slightly or drastically effects the other. Or, “the devil is in the details,” in which the opposite happens, the smaller-scale being skipped over while the next-larger-scale is focused on. You’ll note that these things matter to each other. They influence each other. In many circumstances, these two scales are caught up in creating each other in at least some small way2. To claim that one is more important than the other glazes over this connection. Plus, the math doesn’t work out right.

Let’s talk about values. I would like a just and equal world. I bet most of the people I talk to would also like some version of this. Some folk hold other amazing core values such as inclusion or empowerment. Here’s the thing to understand: anyone you interact with3 will be holding something like this inside of them. Maybe not so explicitly, maybe not as an active part of their interactions, but it is there.

Let’s talk about fault. The people that got us to where we are now were doing the best they could under the circumstances. Maybe some were malicious, but generally. they were just surviving. People in power tend to want to continue doing well. People who are out of power generally make do, though they’re likelier to have a generally more shitty time. Inequality makes both sets unhappy. It’s not the fault of the people in power that the structures which allow them to be in power exist; it’s not the fault of those out of power that they were born into a setting that keeps them out of power.

Let’s talk about responsibility. While no one currently alive is to blame for history, we are currently building the next generation’s history. Hell, we’re building our own. And we have a responsibility to act in a way which upholds our values, rather than shirks responsibility as bizarrely tied to fault. I don’t want to take the responsibility to respond kindly to this person because their upset is not my individual fault. I don’t want to help clean up after dinner because not all the plates are my fault. I don’t want to take responsibility for mending the rifts in society because they’re not my fault4.

In each of these, it is not just what you are asking for yourself, but what you are changing in the people around you. When a child is being surly, and a parent reacts badly because a nerve got struck5, the wrong lesson is being imparted. It’s not about the parent’s feelings in that moment. It’s about how the child learns how to react to someone expressing their feelings in a not-yet-eloquent way6.

Sometimes taking on this responsibility to society means shutting up, even when you’re right. Sometimes taking on this responsibility means speaking up, even when your voice trembles. Sometimes this means cleaning the common area, even though you haven’t even been around for the past week. It means having differences and resolving them in a way that makes sense for future generations to also resolve them, even if you’re not happy with the results.

When anyone says “my individual experience matters more in this moment than how we as a society deal with moments like these” I see them as throwing a tiny tantrum rather than building a better world. It’s not their fault. Why should they have to do anything to fix it? This is why I continue to think Laurie’s piece is so great and I get filled with rage and bile at StarSlateCodex. This is why I find GamerGaters outright laughable7. This is why I find some of my geek feminism friends so aggravating at points7. In all of this, I see why they’re saying what they’re saying. Of course those feelings are valid. But that’s not the whole point, is it?

Get our shit together. Focus on where we want to be, and manifest that in each interaction we have. This is what I assume most people are doing, and why I’m now so comfortable saying “I don’t like how we’re doing this, can we try another way?”

I don’t like how we’re doing this. Let’s find another way.

 

1. And race, now, too!
2. Exceptions of pragmatic lock-and-key example, and the theoretical molecule representation of same self model.
3. With incredibly rare exception, not based on if you get along with them or not.
4. Are you fucking kidding me, this is how we get ants.
5. children can be astute little fuckers
6. I am in no way claiming to be amazing at this, merely that I am aware of, and subsequently actively working on, it.
7. “You need to listen to me!” they say, while not listening.

Complexity Salon : Ebola

These notes were taken at the 2014.Dec.18 New England Complex Systems Institute Salon focused on Ebola. Sam, Willow, Yaneer contributed to this write-up, and 20 people were in attendance. We hope you’ll join us in future. We’ll have unstructured meetings each Wednesday from 18:00 to 20:00 (6p-8p) starting Jan 21st, with the fourth Wednesday of each month structured towards contribution towards a global challenge. The next such structured event will be on January 28th, on the subject of ethnic violence. You can see notes on this and potential future subjects here, and can register here.

About Ebola at NECSI [briefing by Yaneer]

NECSI has a history of studying Ebola models, and has predicted something similar to what is currently going on in West Africa for some time now. NECSI started with a model of pathogen evolution in which the most aggressive stable state has virus constantly passing slowly through populations, creating islands, dying out as people expand into areas with no disease.

Aggressive diseases plus long-range transport

Then if you add long-range transport, you get more and more aggressive strains. The more long-range transport you have the more aggressive the strain can be without dying out; and eventually could kill an entire global population. Paper published in 2006, mentions risk of Ebola.

As transportation becomes more pervasive, vulnerability increases.

Early warning and preparedness

Presented to the WHO in Jan ‘14. They were respectful and excited by the work. Discussed other public health issues faced by WHO, however didn’t return to pandemic models.

Since then: outbreak happened. Lots of discussion. Why don’t we engage in risks in a more serious way? Everyone thinks their prior experience indicates what will happen in the future.

  • Look at past Ebola! It died down before going far, surely it won’t be bad in the future.
  • Models of outbreaks look at existing conditions, which prove to be too limited here.

Example: with flu, people take exactly that disease and known circumstances, and simulate an outbreak, ignoring changes in the disease or in the conditions (and: nothing has to change in order to have huge risk). the same properties could remain, but a low-probability event could unfold, “fat tail distribution” – past experience isn’t necessarily a predictor of what will happen in the future.

Individual and community

Contract tracing, the standard public health method, doesn’t work well when there are more than just a few cases. Stop thinking about the contacts of the person, think about the community. Travel restrictions so new communities aren’t infected. Now that people go door to door for symptom screening, the cases have decreased dramatically in Liberia.

People were saying: “The beds are empty!” Authorities responded: “We can’t figure out why. We think people are still sick!” Why are the hospitals and authorities waiting for the sick to show up? Going door-to-door in the neighborhoods shows what’s going on, and is what is effective.

Once you know the right question, the answer is clear.

Interests

We then stated our interests – each person said one thing about the topic or intro talk they’d be interested in diving into more during breakout groups Continue reading

Expressions of Solidarity

Aside

I wonder if, what Scott means, in this whole storm recently, is actually:

“Your struggle is my struggle. While I had a really rough time growing up, it must have been just as hard for people like me, and even harder for those facing structural oppression. I want to fight these systems with you. When you say I’m ‘privileged,’ I feel like my experience is being discounted and it makes it difficult for me to be in solidarity with you.”

I feel like this is what Laurie is asking for. I know it’s what I would ask for.

Museo aero solar

Years ago, after Chaos Congress, Rubin insisted we go to some art show. I, as always, preferred to stay at home — whatever continent, country, city home might be in that day. But Rubin can be lovingly persistent. It would be worth it. It would be beautiful. We went, mere hours before I boarded a plane from somewhere to somewhere else.
blue-haired willow has her back to the camera, focused on a large transparent orb. Children play in the orb, suspended on a clear sheet of plastic. black lacing holds the orb in place. Rubin took this picture, and Willow is fond of Rubin.
Biosphere was a study in liminality to me, suspended spaces tethered to more commonly understood as habitable floors and walls. Perfectly clear water in heavy plastic and vast space define in clarity and iridescence. It was a liminal future, an in-between home, the moment the wheels leave the runway. The terror of my anxiety and the complete love for the possibility of Something Different, wrapped up in the moments of stepping into the future. In short, Rubin was right.

Jump forward a few years.
When Pablo invited me to Development and Climate Days in Lima, I was glad to go. Even before the deeply pleasurable and productive Nairobi gig with Red Cross Red Crescent Climate Centre and Kenya Red Cross, I trusted Pablo to have spot-on inklings of the future. Maybe all that climate forecasting has gotten into his social forecasting as well. His efforts around serious games resulting in their now being generally accepted, he told about an art-involved step to get people to think about the future differently. Something about plastic bags, and lighter than air balloons. Would I be willing to, in addition to my talk, document their process of creating a Museo Aero Solar for others to participate and replicate? Of course – distribution of knowledge, especially with illustration and technology is kind of my jam. It would also help me venture into the city.

I arrived at 2a to a deserted city and a vast and rolling Pacific out the cab window. I cracked jokes with the driver based on my poor grasp of Spanish (“ehhhh, Pacifico es no muy grande.”) He humored me. And in the morning, mango that tasted like sunlight, and instant coffee, and the Climate Centre team of whom I am becoming increasingly fond. And a new person – the artist Tomas, with whom Pablo and I ventured to an art space to join the already-started process of community building and art creation, large bags full of plastic shopping bags ready for cutting and taping. Pablo eventually had to go spend time at COP20, I relished not going.
a phone-camera captured image of a pamphlet instructing how to create a museo aero solar. it instructs the collecting, cutting, taping, and combining of plastic bags.
I took such specific, ritualistic care with each plastic bag. Cut off the bottom, cut off the handles, cut a side to make a long rectangle. Lay it gently on top of the pile, pressing down to smooth and order. Pick up the next bag. Feel it on my hands. The crinkle, the color. Smooth it out. Cut. Place. The sound of tape being pulled, torn, applied, and stories told in Spanish. The slow joining of each hand-cut rectangle. I smiled, to dedicate so much care to so many iterations of things which are the detritus of life. Francis laughed with me, saying she felt the weight of each one. A heavy statement for something so light. Tomas walking around, constantly seeming to have attracted a bit of plastic bag handle to his heel, no matter how many he peeled off, a persistent duckling of artist statement.

We went to the Lima FabLab to speak to a hackathon about making a GPS and transponder so we could let the creation fly free without endangering air traffic. And this time I saw it from the outside – seeing Tomas speak to a group of self- and community-taught Peruvian coders, and seeing their faces display disbelief and verge protection against the temporal drain of those outside your reality. Then, as he showed step by step, and finally an image, that these can fly, their cousins can lift a person, grins break out. Peoples’ hearts lift, new disbelief replaces the jaded. There is laughter and a movement to logistical details.

And then we took it to the D&C venue, and it worked.

I imagine what Pablo must have gone through, to get bureaucratic sign-off on this. No metric of success. No Theory of Change. Him, fighting tooth and nail for a large and hugely risk-adverse organization to trust fall into the arms of a community, an artist, a facilitator, and a game maker. And they did. And it changed the entire event. People in suits crawling into this cathedral made of plastic bags, each individually cut and added with love to the whole. A pile of fancy shoes outside the entrance, like a ballroom bouncy castle. People’s unabashed joy watching art some of them had made become a room, and then lift off to become a transport.

This future we want — it’s hard work, it can seem impossible. But it’s right here, we made it. It works, and it is beautiful.

I brought up ways for other people to participate. In a beautiful act I would associate with Libre ethics, the Lima crew have opened up not only our stories, but our process. We want you to join us. We want you to be a part of this future, and it means hard work. The fledgling wiki and mailing list can be found here. I hope you hop on.

Heatwave Hackathon

Hugs and thanks to Lindsay Oliver and the Kenya Red Cross team for their contributions to this entry.

On November 15th, I helped facilitate the Red Cross Crescent Climate Center’s HeatHack 2014, a gathering of amazing people to collaborate on solutions to climate-related challenges. This event focused on the risks and impacts of heatwaves, and how to provide community care and safety nets for at-risk people during extreme weather episodes.

In case you wonder what a hackathon is:

A hackathon is a gathering of diverse people who form teams to work on addressing challenges over a short period of time. These challenges can be technical, physical, resource-based, or even social. During HeatHack, participants learned about heatwave challenges from climate experts and people who have experienced heatwaves firsthand. Teams formed around potential ways to address these challenges, and worked together to come up with solutions to present to the judges. Prizes were awarded based on innovation, documentation, usability, and inclusiveness.

Why “HeatHack”?

Heatwaves can cause power outages, wildfires during a drought, buckling and melting roads, burst water lines, and serious health effects such as severe sunburn, heat cramps, heat exhaustion, heat stroke, and death.

  • According to NASA, when the temperature hits 95*F (35*C) your ability to function drops by 45%. Your loss of accuracy is 700%.
  • MPR News reports that body temperature can rise to 105*F (40.6*C) if working outside in a heatwave. Death occurs usually when a body temperature reaches 107.6*F (42*C).

Despite the severity of heatwaves, the health risks often go unnoticed because the people most affected are easily overlooked in a large population, especially if they are poor. We need to create ways of responding to these challenges to care for people who are currently at risk and to prepare for future heatwaves. As the effects of climate change become more severe, the number, length, and temperature of heatwaves will increase – including in Nairobi! Climate change affects the entire globe, and Kenya can lead the way in creating solutions that help as many people worldwide as possible. Continue reading

A month in Nairobi

Background of the gig

Pablo and games

I met this guy named Pablo Suarez in a pub in Boston, when our mutual friend John Crowley insisted I leave my introvert-hole. When John insists, I tend to listen. And as always, it was totally worth it. Pablo plays games. As a climate scientist, he got tired of people falling asleep in meetings. He was aware of the direness of the situation, but no one else felt the same urgency. So he started expressing probability and costs and delays through dice, and beans, and objectives. He’s played these games with people who live in disaster-prone areas on through people at the UN who make policy about resource allocation. He’s created actual, connected change through an entire system. We’ve since embarked upon a few event adventures together, and I’m glad to call him friend and cohort.

My experience with KRCS

And so I met this guy named Dr James Kisia, when Pablo suggested I take a gig at the Kenyan Red Cross. In a continuing trend, when Pablo suggests things, I tend to listen. James has become well known as an innovator in the NGO/innovation space. As an example, reframing the understanding and practice of social entrepreneurship in resource-poor settings. Exploring sustainable resource mobilization for an organization whose relevance in disaster-prone Kenya is increasingly becoming apparent. The KRCS runs 3 hotels in Kenya, taking advantage of the fact that conferencing is a major business in Kenya, and in Nairobi particularly. It might seem paradoxical, having a five star facility on the campus of the a humanitarian organization, but the money the hotels make is ploughed back into the humanitarian work of the organization — including non-funded sudden onset disasters.

Based entirely on good faith, shoe strings, and a few well-placed calls, James and I embarked upon a trust fall with each other, based entirely on Pablo’s word. The Web of Trust in real life. I arrived to Nairobi for 4 weeks of work with little guidance beyond to lay groundwork for a Dadaab-focused intern or contractor, as specific to what would be applicable to climate change issues as well.

KRCS in Dadaab

Kenya Red Cross has been incredibly gracious, open, and stimulating. For example, they set me up with an incredibly kind gent named Francis who picks me up at 06:10 each morning, and again at 19:30, so we can avoid the traffic of Nairobi. He insisted I bring the lesson of “we belong to society” back to the states. When I asked for time or materials, such were readily granted. When pushed or indicated discomfort at ideas or practices, the willingness to engage and improve made me feel safe and encouraged. I have the honor to work with a number of wonderful groups, and KRCS and the Climate Centre are now absolutely within that grouping.

Beyond what I was there to focus on, KRCS does a LOT of stuff. But pertinent to the overlap, they got involved with the Dadaab refugee camp in 2011, after some MSF Spain representatives were kidnapped, and a bunch of the responding organizations subsequently pulled back their support. This was at the same time as a 150,000ish person influx into the Dadaab complex due to drought and conflict in Somalia. This knowledge meant my problem statement was emerging: if climate change means more Dadaabs, how do we make better Dadaabs?

Screen Shot 2014-11-21 at 5.56.10 PM

holy wow this is a lot of text. here is a dinosaur on a skateboard, from one of my evenings Not Working

This is complicated by the following: refugee camps are meant to be temporary, and in part are agreed to by the host community under this assumption. People are fleeing untenable situations, often malnourished and generally in poor health. As infrastructure and response is set up to respond to their current status as well as issues of close proximity (sanitation, gender-based violence issues), living conditions in a refugee camp, while still sub-standard, can still be better than the originating location. Such a difference decreases the likelihood of a departure from the camp back to origin. So improving the conditions towards increased dignity and health in camps is in tension with available resources and welcome of where the camp is located.

What I Did

Desk Study

There are a TON of reports around different aspects of the Dadaab complex, many of which are available via the UNHCR website. While KRCS and other partners understand the interconnected nature of their response, reports are still released along very specific categories. I spent most of my time on Health and Nutrition, in no small part due to the mind-blowing transition from 38% acute malnutrition in 2011 (at the beginning of their involvement) to 14.9% one year later (for the part of the camps where KRCS involved – not the whole camp). It’s now below Sphere standards for emergency, and they continue working to eradicate it completely.

That said, many of these reports are in pretty standard format. By which I mean, 200+ pages per year of “in figure XX.YY you’ll see that ACRONYM_SOUP VERB_ABOUT_DIRECTION by a STATISTICAL_TERM PERCENTAGE.” Not the most entertaining, which is tragic given the time, energy, depth of understanding, funding, and outright care that go into these. How are people supposed to learn… to iterate based on these?

Interviews

I also got to engage in my favorite way to get to know a topic… talking to people. I sat down with people who work in Dadaab (some via skype, some in person). I couldn’t go toDadaab myself, as security there is still a major issues (IEDs, kidnappings, general violence), primarily assigned to al Shabab. As blatantly mzungu, I could be the target of such attacks, and KRCS is one (if not the only) of the groups that act without security. This is very upsetting to me, and we’ll figure it out when/if I come back. I feel unbased, uncertain, but also trusting in those I interacted with on a daily basis who dospend time in the camps. So interviews were all recounting of people who know Dadaab well – the partnerships around the camps, operations, community engagement, health and nutrition, and management. I typed, I drew, I thought. All of this folded into a codesign workshop to shape next steps for me, and suggestions to the rest of the team.

Workshop Design

I wanted to impart 3 things during a workshop, to the purpose of improving conditions in Dadaab. 1) making information tangible makes it easier to iterate on, 2) there are many ways to make information fun to make and fun to take in, and 3) there are TONs of tools out there that can do both of these, as well as opening up new paths to engagement with a wider community (either through code or through content creation). As anyone, the attendees are busy with meaningful projects, and so making the most of their time was vital. Having James’s support meant those I hadn’t had a chance to bond with still came, so we had a diverse set of individuals at the workshop. I set out with the following objectives:

Long-term objective for this working session: A better curated knowledge base for improving conditions in / responding to needs in refugee camps and informal settlements, especially as extendable to climate change issues. Audience: Refugee response groups, climate change organizations, active citizens.
Mid-term objective from this working session: A thriving platform for the sharing and improvement of information on Dadaab within KRCS. This platform might be technical, process-based, or both. Audience: KRCS Dadaab-focused staff and volunteers.
Short-term objective from this working session: A list of knowledge sets to curate and give to others for streamlined working conditions. Audience: Incoming Dadaab Refugee Operations personnel.

I walked through the workshop a half-dozen times, talked through it with my housemate Danna (with whom I’ve been recording songs), made sure all the backing documentation was done, that the examples of summaries were precise, that the people calling in about their tools were prepared, and that the outline of the workshop was populated with instructions, but not so detailed it wouldn’t allow the conversation to be organic. The language was cleaned up and made accessible by one Lindsay Oliver, who is currently looking for contract work and you should totally hire her. And then I clenched my hands while I slept, nervous as always, anxious to build and succeed. You can see how the workshop went over on the Civic blog (and yes ok maybe here, too) on Monday.

Networked Mortality

Death is different now. In a time of networks and social media, it’s not just having a song remind you of your deceased loved one anymore, it’s Spotify suggesting you listen to their playlists. It’s scrolling just a bit too far too soon and seeing their last shares on Twitter or Facebook. It’s not just figuring out funerals and atom-based belongings granted through wills (or figuring things out there wasn’t any pre-planning), it’s a faceless mass of internet informing you that your friend has died. It’s not just compiling half-finished scrawled songs and old love notes, it’s debating cracking the password for a laptop full of memories. Because the internet and technology haven’t just changed how we live – it’s changed what happens in death. And we can simply be awash in tragedy in these new ways, or we can use those new connections to show our care and values, even through death.

Today the spontaneity of planning, which makes it possible to search for a place to eat with your incoming friend while already out the door, forms habits making the avoidance of planning for death even easier. But after working through the unexpected deaths of a number of networked friends, I have started explicitly planning for the eventuality of my own death, to ease the burden on others. I’ve set up a living will (detailing things like whether I want to be kept on life support — I don’t), a will (what to do with my corpus and my corpse — open them up and share the contents), and mechanisms for notifying the many communities I inhabit, helping them find each other for support. The compartmentalization of online selves otherwise makes discrete and care-full notifications difficult, and sadly the current viable option is mass broadcast.

Because I’m also from the parts of the internet that care about open access and free software, friends and I have taken my death preparations and formed a guide for the bits of postmortem planning other guides may have missed. Based on ideas from open access and information security, it includes topics like how to deal with passwords, contact lists, plans for account deletion while archiving information, and donating one’s body to science in ways that support open research.

This living documentation is called NetworkedMortality, and I hope it helps others to start thinking about and planning for the inevitable, either privately or in this wiki-based and public place. Just as the internet is about creating, storing, and transmitting knowledge, this guide is about contributing to something larger than the individual. It’s about continuing to build the commons, establishing protocols for death in the digital. The sorrow of death need not also be accompanied by confusion over what intentions would have been or who should know what. Funeral home directors and lawyers have helped guide us through the protocols of death in the better-known world. In this new space those steps are considered by Twitter, Facebook, and Google, but I at least would prefer to trust people I know to deal with my wishes more accurately and with more love. We’ll be hosting a “death drill” to test out these new protocols on December 13th from 2p-5p at the Berkman Center.

Too often, we think only about the short term – this quarter, this school year, this laughably short short life span – when considering how we plan as well as what we build. We must instead intentionally look to the public future, and our responsibility as members of that shared story. We must contribute to freely available knowledge which lasts beyond our brief moments. An unavoidable part of life is death. Let’s care for each other, and hold true to our values, through the entirety. Let’s network our mortality, together.

P.S.

It is possible to speak about death without fear – I hope you can act from this place.  If you are in danger of harming yourself, please get help, rather than indirectly indicating through things like estate planning.