Preparing and caring for those with disabilities, in disasters

November 16, 2014

This semester in crisis informatics has been eye-opening, each unit adding another layer of complexity, or showing another angle on information needs and behaviors during disasters. It has been energizing to see the work of groups like DIMRC and the Standby Task Force, and to think about the possibilities of technology and crowdsourcing, like the ideas discussed in Patrick Meier’s blog iRevolution.

Last week’s unit on preparedness for people with disabilities was one of the biggest shocks of all, for me. It shouldn’t have been, had I ever considered the situation of people with disabilities in disasters; but, like most emergency planners (according to the NCD report), I hadn’t.

Talk about adding a layer of complexity. The 2014 report by the National Council on Disability notes inaccessible television announcements, emergency notification systems, maps, emergency websites, and other communications. It mentions “shelters at which no one is able to communicate with people who are deaf or hard of hearing” (p. 9).

Frieden (2006) notes that many of these difficulties listed above faced people with disabilities during and after Hurricanes Katrina and Rita. (Another major challenge, though not an information challenge, was the lack of accessible transportation to evacuate people with disabilities.) As a result, he asserts, people with disabilities were “disproportionately affected” by the disasters. One major reason is the media used for emergency communications. Most people get their information from television, but most broadcasts were not captioned or did not include ASL interpretation. Some deaf and hard of hearing tried to use their cell phones, but when the towers blew down, they were useless.

Earlier in the semester, we praised radio as a great, cheap, community tool for sharing information. But what if you are deaf? When the power goes out, “radio becomes the primary, and in many cases, the sole lifeline and communication tool to a community and its residents Frieden’s report is full of chilling statistics and testimony. But the most sobering quote, I think, is this one: “The challenges faced by people with disabilities during and after the Hurricanes, while unique in scope and proportion, were similar to the challenges people with disabilities face on a day-to-day basis” (Frieden, 2006, p. 2-3).

In theory, the ADA and Section 508 and other legislation protects the rights of the disabled and ensures them access to information from Federal agencies, including emergency information. But Homeland Security and FEMA’s own websites were found not to be compliant (p. 9). If our agencies can’t be bothered to ensure access on a day-to-day basis, how can we expect our citizens with disabilities to trust in them in case of disaster?

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Crowdsourcing code of conduct

October 27, 2014

Patrick Meier recently posted a proposed Code of Conduct for digital crowdsourcing. Essentially it states that organizations initiating crowdsourcing projects must treat their volunteers legally, ethically, and transparently. It also goes beyond that, to state that organizations must give clear guidelines “so that volunteers are able to contribute meaningfully,” and take reasonable measures to ensure that they are not wasting volunteers’ time by duplication of effort. These are all considered “musts.” In addition, there is a shorter list of “shoulds,” which recommend treating volunteers with care and respect.

I think the Code of Conduct is a terrific idea, given that crowdsourcing power, and numbers of volunteers, are growing. Digital volunteers who want to maximize their impact can choose to volunteer only with organizations that voluntarily abide by this Code of Conduct.

I think an important corollary to this Code of Conduct is a digital volunteer’s responsibility to act ethically. First of all, this means researching the crowdsourcing task to the best of one’s ability, including checking whether the organization abides by the Code of Conduct. Even if they do, volunteers should take responsibility for researching the given task and understanding the larger goal, in order to make an informed decision.

To pull an example from fiction, in Dave Egger’s The Circle [SPOILER ALERT!], crowdsourcing is employed to find someone who emphatically wishes not to be found, with tragic results. The individual who orders the crowdsourcing project acts unethically, to be certain. But the thousands of individuals that volunteer for the project are also responsible for the tragic consequences of their collective actions, are they not?

That example may be from fiction, but there are already real-life examples of ethically questionable crowdsourcing. Meieir says, “What happens when future mass-sourcing efforts ask digital volunteers to look for military vehicles and aircraft in satellite images taken of a mysterious, unnamed “enemy country” for unknown reasons? Think this is far-fetched? As noted in my forthcoming book, Digital Humanitarians, this online, crowdsourced military surveillance operation already took place (at least once).”

Digital crowdsourcing volunteers may just be tiny pieces of a larger mechanism, but without those pieces, the machine doesn’t work. Organizations should abide by an agreed-upon code of conduct, but volunteers must also bear responsibility for their actions.

Meier, P. (2014, October 21). Code of conduct: cyber crowdsourcing for good. Retrieved from http://irevolution.net/2014/10/21/code-of-conduct-cyber-crowdsourcing-for-good/

Meier, P. (2014, September 30). May the crowd be with you. Retrieved from http://irevolution.net/2014/09/30/may-the-crowd-be-with-you/

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The importance of social capital in crises

October 5, 2014
In our Crisis Informatics class, we’ve discussed ways to use information and communication technology (ICT) and social media for crisis information management, and we’ve discussed more traditional methods. But in real world situations we’re reading about, there is not such a clear dichotomy between these methods of handling crisis information. It’s usually more of a blend. I noticed a common theme in our readings — that no matter the format of information, there is a huge value in social capital.
Patrick Meier defines social capital as “those ‘features of social organizations, such as networks, norms, and trust, that facilitate action and cooperation for mutual benefit.'” He goes on to say that not only does social capital increase “a group’s capacity for collective action and thus self-organization, which is a key driver of disaster resilience,” but “case studies suggest that social capital is more important for disaster resilience than physical and financial capital.”
It’s easy to imagine the value of social networks after (or during) a disaster, especially in the immediate aftermath, before the government and NGOs have been mobilized. In chapter 8 of CIM, “Community media and civic action in response to volcanic hazards,” Birowo remarks on “the importance of social capital, especially social networks [which] have value that can help people coordinate their activities” (p. 150). This is demonstrated by community radio, which at the time of a disaster, already has established networks in the community that it can activate (CIM, p. 141). During the eruptions on Merapi, volunteers not only kept the community radio stations running, but they also found other creative ways to alleviate the disaster’s damage. When the radio station went offline due to evacuations, volunteers pitched in with aid to refugees (CIM p.147-148).
It’s interesting to see that social capital has value even on digital networks. For instance, in her chapter in Crisis Information Management, Kate Starbird mentions a Chilean woman (Twitter handle @Clandrea) who was a valuable contact after the 2010 earthquake. Starbird writes, “the importance of a local advocate who can localize such a socio-technical effort cannot be underestimated.” @Clandrea “had both international and local influence during the event,” using TtT syntax, and retweeting tweets from Project EPIC. She demonstrated that it’s not just how many relevant tweets are sent, “but rather who sends them.” She goes on to say that “ideal messengers … are recognized as having local authority during an emerging event” (CIM p. 56).
The lesson I’ve learned is that no matter the method of information management, it’s important to remember that it’s about connecting humans to humans — creating networks to help communities rebound after crises.
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Information to fight the Ebola epidemic

September 14, 2014

Reflective Blog Post #1 for Crisis Informatics

Developing countries have enormous challenges in health care, with lack of trained health care workers, up to date equipment, and medicine and other supplies. Epidemics like the current Ebola crisis are particularly difficult and, as seen in Liberia, can threaten to overwhelm an already fragile system.
The Ebola virus seems to have its own special fear factor. The fatality rate is high,  there is no  vaccine, and the cure is only in the experimental stage (used, famously, on two US missionaries who contracted the disease). Fear and a great deal of misinformation spread with the disease. People look for hope in false cures (such as drinking salt water, which has already killed two people in Nigeria). Some believe that health care workers who have come to help are actually spreading the disease.
Many of the West African communities affected by Ebola are rural, with few or no TVs or radios, and rely on traditional oral systems of disseminating information. MSF’s Dr. Marc Forget told CNN that “we need to go to the thousands of small villages and repeat the message on and on … It has to be one by one contact that needs to be done through the chiefs, the local authorities, the youth. It is time-consuming and very difficult.”
It is also critical. Okware, et al, state in their study of the 2000 outbreak in Uganda that “past experience in epidemic management has shown that in the absence of regular provision of information to the public, there are bound to be deleterious rumours.” They found that, in the successful management of the 2000 outbreak in Uganda, “rumour was managed by frank and open discussion of the epidemic, providing daily updates, fact sheets and press releases. Information was regularly disseminated to communities through mass media and press conferences. Thus all levels of the community spontaneously demonstrated solidarity and response to public health interventions.”
On the flip side of the crisis, local health care workers need better information. Dr. Margaret Mungherera, President of the World Medical Association and HIFA2015 member, says that in addition to adequate supplies and medicine, health care workers must be given training on infection prevention, proper protocols, etc.
Specially trained people from around the world are coming to West Africa to support local health care workers and fight the epidemic, but they can find themselves stymied by lack of information. For example, Rachel Levine of the US Public Health Service is ready to do contact tracing to contain the outbreak. (Contact tracing is finding all the people that an infected person had contact with, all the people they had contact with, and so on.) But contact tracing doesn’t work, because the addresses in the database Levine was given are often missing, or so vague as to be useless. She even found that the format of the information was not very usable — an “unwieldy Excel spreadsheet.” She brought special CDC software to help manage the workload. Uganda used an app called mTrac  that lets health workers use SMS on ordinary mobile phones (no smartphone needed) to report suspected cases.
As Guinea, Liberia and others struggle to contain and eliminate Ebola, they may be able to use some lessons learned from Uganda.
———————-
Okware, S. I., et al. (2002, December). An outbreak of Ebola in Uganda. Tropical Medicine & International Health (7)12, 1068–1075. DOI: 10.1046/j.1365-3156.2002.00944.x
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Collaboration for credit

August 16, 2012

A portion of the work towards my MLIS will be groupwork. Apparently I am not the only one made anxious by this — a large portion of the unit on personal skills focuses on the dynamics of groupwork, common pitfalls, and how to succeed.

During the years I’ve been working, I’ve developed many of the personal skills that SJSU suggests I need to study online (“Is Online Right for You?“), such as time management and organization. And after working with information technology for fourteen years, I’m extremely comfortable with technology. If I don’t already know it, I can pick it up quickly enough.

The San Diego Community College District’s Online Learning Readiness Assessment gets a little more into the nitty-gritty. Of course, I have no problem working on computers, or meeting deadlines. I plan to log in every day so I don’t miss anything important.

I’ve also worked a great deal in teams — and, unfortunately, in “committees,” according to Haycock’s distinction between the two. At one job I was fortunate to be part of, and later, manager of, a real team. I like to think I am comfortable in a leadership role, but also comfortable accepting someone else as leader. My weakness is dealing with conflict in groups — I don’t have the patience or skill for it.

For my SLIS work in particular, there are other issues that give me pause (and probably will for my teammates too). One obstacle is that I live in Kampala, Uganda, and most of my classmates live in the US — and most of them on the West Coast, 10 time zones away. It’s true that technology can shrink these great distances, but scheduling group meetings is not going to be easy for my team. I also have to factor in my responsibilities with my children. For example, I hope no one asks to meet between 8-10 am Pacific time — that’s dinnertime and bedtime here, the toughest time of day, as any parent can tell you.

I thought Haycock’s presentation was good — detailed and realistic in terms of describing dynamics of groups. Two parts stood out to me. First of all, the importance of establishing ground rules (even for things that seem like they should be no-brainers, like showing up prepared and on time). Secondly, the benefits of choosing a team leader to make decisions when the group is stalled. I’m still a bit nervous about my upcoming groupwork, but I’m feeling hopeful that with these tips, my classmates and I can work through “storming” right to “norming” and “performing.”

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Starting my MLIS

August 11, 2012

I’ve started working toward a Master’s in Library and Information Science (MLIS) at the San Jose State University School of Library and Information Science (SJSU SLIS). Well, not exactly at SJSU. Their program is 100% online, which, since we’re living in Kampala, Uganda, is exactly what I need. (I found some programs claim to be 100% online, and their courses may be, but they still require one on-site orientation or visit.)

When people ask me why I’m pursuing an MLIS, I tell them that it will tie together my experience and interest in information technology with my experience and interest in libraries. Sometimes I feel like I am straddling two worlds. In one world, there are real, paper books, manuscripts, prints, photographs, and other artifacts. The other world lives on computers and in the proverbial cloud.

It seems many people only want to live in one of these worlds. Some say they love the feel and the smell of their books, and will never give them up for e-readers. (Though they might change their tune if they were living overseas, and had no access to books. I sure did.)  Others say that putting information online makes it available to anyone, anywhere — and saves trees too.

Sometimes I feel like the only one who understands the joy, and the limitations, of both these worlds. I love *things*. I love film photography and old record albums and book covers and my preschool son’s artwork. On the other hand, I love having my photos, books, writing, and music in a weightless, portable, easily searchable format. (Having lived in four countries in the past three years, this is priceless.) Don’t make me choose between the world of physical objects and the world of information; I don’t want to give up either.

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USIP certificate course wins Best Practices award

March 28, 2009
screenshot from USIP Certificate Course in Interfaith Conflict Resolution

screenshot from USIP Certificate Course in Interfaith Conflict Resolution

Last year I worked on the U.S. Institute of Peace’s certificate course in Interfaith Conflict Resolution.

Just this week my client emailed me:

“Good news.  Our Interfaith Conflict Resolution Course has won a Best Practices Award from the U.S. Distance Learning Association.  Very nice recognition.  A lot of elements went into it, the narrative, the videos, etc., and you contributed in a variety of ways.  But the photo selection in particular brings life and originality to each page.”

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Editing Movable Type for OLPC News

March 4, 2009

OLPC NewsMy friend and colleague Wayan Vota launched a site called OLPC News in 2006. Now the site has a three-person editorial team, over a dozen other authors, and 5,000 readers per day.

In their own words, the editors “do our best to celebrate what is going right, question what is going wrong, and suggest what could be done better. Cute pictures of children with shiny new laptops don’t keep us from asking tough questions.”

OLPC News has been running on Movable Type since launch, and now runs Movable Type Pro, version 4.21. I have years of experience with Movable Type, so I was happy to help make some recent small changes to the templates and to the CSS. Here is how I was able to help:

  • Added automatically generated (tag-based) list of related entries at the end of each entry
  • Changed search results so that clicking on a tag brings up a list of entry excerpts (instead of full posts)
  • Visually differentiated comments by the entry authors
  • Visually differentiated the recent forum posts and recent comments in sidebar
  • Formatted trackbacks to look more like comments
  • Adjusted the header text and image slightly
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Goree Island photograph

December 7, 2008

Maison des Esclaves

I’ve granted permission to Professor Emeritus Alvin O. Thompson, Department of History & Philosophy, University of the West Indies, Cave Hill Campus, Barbados, to use this photo. Dr. Thompson is writing a small book entitled Confronting Slavery: Breaking through the Corridors of Silence. The photo was taken in the courtyard of the Maison des Esclaves (Slave House) on Goree Island, Senegal.

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Dogon country photographs

September 18, 2008

The UK-based Quality Improvement Agency will be using two of my photos of Dogon country (Mali) in publicly-funded educational materials.

cliff painting in Songo
The first is of cliff paintings in Songo, Mali. Songo hosts an excision ceremony every three years for all boys of age. For better or worse, it is also attended now by many tourists and international journalists.


Dogon granaries in TeliThe second photo is of a pair of typical Dogon granaries, which store millet, onions, tomatoes, and other supplies. This one is on the cliffs outside Teli, Mali.

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