The Information Society
December, 2003
Geneva, Switzerland

Sylvia Caras, PhD


The digital divide is only a small part of the divide caused by poverty.

The word governance means very different things in the construct global governance and in the construct internet governance.

Researchers and scientists must become involved in the political, in local policy.

Proposed Draft Geneva Declaration on Accessible Information Society: (later expanded)

We, participants of the Global Forum on Disability in the Information Society, held on December 12, 2003 in Geneva Switzerland, declare in solidarity that

1. Persons with disabilities, as an integral and indivisible part of human society, must be included in all aspects of the information society and must be able to enjoy the rights of full participation free from all types of barrier, prejudice and discrimination.

2. Content of information and communications including ICTs, which play a crucial role in shaping the information society, should be made accessible to all including persons with disabilities, based on Universal Design principle and the use of assistive technologies.

Themes of WSIS, digital (and other) divides, information privacy, micro-projects especially using cell phones, whose society is it?

"During the WSIS process the discussions on ICT security have shifted from the need for infrastructure integrity to a politicised agenda, characterised by military language and a stress on safeguards against possible terrorist threats. ... national security concerns rather than by concerns for the protection of privacy standards."

"The right to privacy is a human right and is essential for free and self-determined human development in the knowledge society. Respect for privacy allows for both participation and detachment in regard to social activities and opportunities. Every person must have the right to decide freely whether and in what manner he/she wants to receive information and communicate with others. The possibility of receiving information anonymously, irrespective of the source, must be ensured for everyone. The power of the private sector and of governments over information increases the risk of manipulative access and surveillance and must be kept to a legally legitimised minimum. The collection, analysis and release of personal data - no matter by whom - should remain under the control of the individual concerned."

Charter of Civil Rights for a Sustainable Knowledge Society

The Information Society
December, 2003
Geneva, Switzerland

Sylvia Caras, PhD

WSIS: The world summit on the information society

In 2001 the UN adopted a resolution underscoring how society is being transformed by the information revolution and concerned with the digital divide and sanctioning the International Telecommunications Union (ITU) to organize a conference.

Sometime in 2002 I found out about the WSIS meeting, knew how well it matched my interests, and made a note to try to attend. I kept looking at the note and thinking about logistics and six months ago, prompted by an air fare sale and the discovery of modestly priced lodging, I made reservations, applied for People Who to be accredited to the meeting (we were) and started to follow the preparatory negotiations. In the last month I found there would be a strong disability presence, indeed a whole disability day, especially to ensure that people who are blind and with low-vision have information access, and that an international mental health group oriented to trauma had a strong interest in a mental health information agenda being included. The Daisy Consortium has been representing disability at the preparatory meetings and there have been exchanges on the discussion lists for the UN Convention about access and language (and signing) concerns.. So I feel delighted to be attending, and pleased at the synchrony.

RSIS: The role of science in the information society

I also have been fortunate to be invited to a preliminary meeting, RSIS, and for several months have been part of email conversations about health and technology and the environment and education and science.

For afterwards, the Beekman Center at Harvard has started this blog, for those who want to track the meetings.

The World Summit in Reflection: a deliberative dialogue on WSIS

In the week before I left I started getting emails from presenters and programs that will be associated inviting me to attend, to register, to visit their booth, ... There are so many related programs that I’m having trouble sorting out the details of the main program! I’m hoping the program book itself will be a bit more helpful. I know when registration is and when the opening reception is.

Just as I was locking windows and doors and suitcases my phone rang. It was American Airlines telling me the first leg of my flight, from San Jose to Los Angeles, had been cancelled because of morning fog in Southern California. They rescheduled me on a United flight that was leaving only 45 minutes later and because I had a last minute reservation change my boarding pass had SSSS coding and I was fully searched at the gate - wanded, shoes off, bags opened, every zipper opened, all things I’d experienced before, and also asked to remove what they called a sweater and what I considered my clothing which felt very invasive since the shell I was wearing underneath is not something I would ever go anywhere beyond my bedroom in. When I picked up my suitcase in Los Angles, it too had been opened and was sealed with a TSA blue plastic lock. The contents seemed slightly mussed but otherwise intact.

Six guests of Project Return: The Next Step presented to the CA PAIMI Council about their lives as users of mental health services in Japan. They noted the culture of shame in Japan, how people with diagnoses do live at home in the community but don’t disclose, how the Japanese system is being imported to other Asian countries, how because of the social death of the consumer, the family too has died, that when family members actually die and there is no longer any one at home to care for them in the community, they are institutionalized, and that "Nothing About Me Without Me" has just started - that there is beginning to be representation on local councils.

The flights from Los Angeles to Heathrow and Heathrow to Geneva went pretty much as expected. On the last leg I sat next to a public health professional focused on children and he pointed to new findings showing that malnutrition is not caused by lack of food alone, but rather that even nutritive thriving only happens when there is caregiver responsiveness and sensitivity to the child, interaction, understanding the child’s cries and satisfying the needs, smiling when the child smiles, ... Providing adequate nutrition to the mother, the family, the child is not enough for thriving. His field is biomedicine and he is startled by this finding.

I’ve selected a modest-priced room at a conference center. Keys have been left for me, but because it is evening, there is no staff. With the help of other guests and my high school French I found the building my room is in and the room. It is square and bare, rough stucco walls, double bed, two walls lined with wooden counters and shelves underneath. Once I unpacked and organized myself it looked more hospitable. There are two electric outlets but I only have one adapter from flat to round prongs and I am switching back and forth charging the computer and other electric items.

Geneva is not on savings time. It is very very dark as I get ready for the 7AM breakfast which is included.. But it’s not appealing - white bread, cold cereal, ... and I was glad I had brought some packets of instant oatmeal. I walked to the bus stop, still in the dark, was baffled by the ticket machine and was helped by another passenger (coins in, push code for ticket you want, ticket printed and extruded), noted one passenger wearing a surgical mask (also there’d been a man wearing a mask on the last leg of my flight), arrived at the station, couldn’t find the next bus stop, asked at a hotel, and soon boarded the bus for CERN. More confusion when I arrived there to register, but I was not the only one not knowing which bus for which tour at which meeting place. It of course was simple - the tour assembles for a preliminary lecture here where some of us are, upstairs. So I finally sit down in the right place and it takes me a good hour or two to recenter myself and review the morning and savor my amazement of actually being where I am supposed to be. Several of us noted that for a meeting on information, a good example was not being set.

CERN (European Organization for Nuclear Research) was formed 50 years ago, has 20 member states, employs 9000 people including 6500 scientists. CERN has a 2500 PC computing farm and projects need for too many more to be practical. With Oracle, there a a project being readied for the Grid, the next iteration of the internet (central databases and computer power with smaller personal systems). CERN has robot-controlled data storage handling. Robot-driven carts retrieve data tapes.

Then we were bussed to a CERN site in France, after the driver was assured we all had proper papers, visa, ... to cross the border, to see the in-process construction of the next, huge, particle accelerator, and bussed back in time for lunch in the CERN cafeteria ($8 for a bottle of water and a small plate from the salad bar) and the 2 PM start of the conference. My seatmate and I noted at the two sites we’d seen how incredibly ugly were the exteriors. There are carrels available to either plug your own laptop into the high-speed line or to use the IBM laptops provided. The site doesn’t seem accessible, there are some ramps but also lots of stairs (later I see one wheelchair placed at the very front, and a man using a pair of hand crutches) no other visible signs of disability among those here. I sat at lunch with two journalists and invited them to attend Friday’s Disability Day or to at least cover it. The auditorium holds perhaps 300, we have assigned seats and once you are in your row, exit and entrance for others is blocked unless everyone not only stands but leaves the row. The seats are comfortable and each has headphones for translation (which isn’t being offered) and a 15" x 25" desk. Tim Berners-Lee who is a keynoter is still aloft. He’s also holding a press day tomorrow and he is a big draw.

Princess Mha Chakri Sirindhorn, Thailand, is interested in assistive technology for pwd. (Her degree is in education).

Dyson: the role of scientists in the future of the internet, role of ICANN (International Corporation for Assigned Names and Numbers) is technical/operational issues, get involved, but don’t expect ICANN to handle policy. Question: domain names are more than technical, that’s a real policy, government issue. Create a system without borders. for input, participation in ICANN

Berners-Lee not here yet, Boston weather has delayed his flight.

Ismail Serageldin, Director-General of the Library of Alexandria, presented a vision of universal access to all knowledge for all people at all times.

Low quality data often used to make policy. Worse in developing countries.

Nico Stehr: Knowledge is the capacity to act. Growing fragility of modern societies. Science is a source of uncertainty, of hypotheses and probabilities, hence it becomes politicized. Next comes a new field, knowledge policy.

In developing world, consider using power lines for connectivity, narrow and broad band.

Juergen Renn: Open Access Initiative: Background - journal crisis, print distribution dissemination is failing, costs of scholarly journals are too high. Big player solution wants exclusive rights. Pilot ventures haven’t provided sustainability. Proposed solution - interoperability free participatory. Berlin Declaration October 2003: sustainable, interactive, transparent, openly accessible, compatible. Next step, join/participate, organizations sign, (I typed that from a slide which was no longer visible and I couldn’t verify. If it doesn’t work please try Google.)

Free journals, open courseware (MIT has set example - courses, lectures, ... online), paperless world. (I want to see a journal for the work of People Who, online only, peer-reviewed. Sylvia)

Today’s session is ending 90 minutes late. There are busses waiting and a banquet planned and I am going to my room to regroup.

CERN Day 2: The morning had five tracks, education, environment, health, enabling technoloy, economic development.

Education: universities release free materials, virtual universities, south-south cooperation, training scientists, lifelong learning, journal access

Environment: monitoring tools for every citizen

Health: stressing evidence and quality of information (I think professional healers are threatened, that health science feels under attack and defensive. S.) This breakout was the only one to focus on content not technology, basic health needs, use indigenous knowledge, global two way information flow, outcome measures for ehealth applications. And previously I’d been in touch with a mental health professional who was attending and was determined to get mental health into the WSIS agenda, again, content at a technical/process conference.

Enabling technology: divide, universal access, quantity of data is growing faster than it can be captured (for instance the CERN colliders).

People reading my name badge are thinking People Who is connected to WHO. It’s awkward to explain no, no, no, ... But it is giving me a chance to talk about disability, information access for those unable to see, and also that too much web page motion can cause convulsions, ...

My sense of the thrust of the two days: scientists and researchers must get involved in regulatory regimes, in selling the impact of their work, in establishing national alliances, they must continue to push for openness (there’s an Open Middleware Initiative)

Berners-Lee: semantic web, standards to tag items that appear across records, for instance zip codes, so that then web information can be sorted or grouped in new ways by each individual user.

Global governance is horizontal and interactive. How many contributors have been affected by an intervention, how can we better construct partnerships.

(Note: This quote is from the subsequent meeting. I’ve inserted it here because of the connection, but it’s tone is political. S.)

"Global governance refers to the mutual relationship and horizontal interaction between the United Nations and other intergovernmental organisations on the one hand and civil society organisations, the different institutions of knowledge production, the business community, the media, local and regional authorities, and parliamentarians on the other. ... On the whole it can be said that innovative formulas of consultation and the presentation of views have moved international negotiating processes from intergovernmental diplomacy to becoming increasingly global political processes with decision-making exposed to concrete inputs from non-governmental and non-state actors and stake-holders."

The digital divide is only a small part of the divide caused by poverty.

The word governance means very different things in the construct global governance and in the construct internet governance.

Researchers and scientists must become involved in the political, in local policy.

A bus from CERN took those who wished to Palexpo, the convention center. While we waited to leave a few of us were chatting about the meeting. I made a few comments, the kinds of things that in the US receive either a nod or a blank stare, and found the others laughing - my daughter says I have a wicked sense of humor, but this is the very first time I’ve been aware of it! That was a nice cap to the day. I registered for WSIS, one of 20,000, at the end of the CERN day and was delighted to see in the conference materials a well designed announcement for the Disability Day session on Friday including a CD produced by The WSIS plenary was Thursday afternoon. The Palexpo conference site is huge and hugely confusing. Yes there are maps and yes there are signs but no they don’t tell me what I want to know. Several hundred exhibitors, Internet Café (no beverages, but lots and lots of computers pleasantly arranged at the little stand-up tables seen at Cafes), Sushi bar, ... To provide security for the heads of state and dignitaries, there’s only one entrance/exit at the opposite end from core events, so lots of walking back and forth. The plenary attendance overflowed into a room with ear pieces and a large screen image. I think I would need to attend several events here before I got comfortable. Kicki Nordstrom, current president of the World Blind Union and of the International Disability Alliance (IDA, WNUSP is one of the seven members.) was invited to keynote for civil society. She spoke from 3 - 3:10, spoke generally about all or civil society and then al of disability with a few examples of how access is so important for someone who is blind. She looked lovely, wearing a deep red jacket and long skirt, black heels, and her blond hair was the accent point. The podium the speakers used has a transparent edge so that the camera showed her fingers reading her speech. She received warm applause. I listened to a another one or two speakers and then decided to not stay ‘til the end.

As I was leaving the overflow hall a reporter from Germany asked me a few questions. Esther Dyson noted there’d been heated ICANN conversations here in the last few weeks. This reporter asked me about that, wondered if the internet should be governed by the UN, if that would sustain more openness and neutrality, because she understood that the US representatives to ICANN were CIA operatives so that the US government could ensure that internet protocols could be used to track information about individuals. Thinking of EFF and CPSR and the value of openness that the internet creators cherish and the leaning towards anarchy, and then thinking of Bush and Ashcroft and The War, I suggested that she write the story, ipublish it, and ask her readers to comment and verify.

Where I’m staying is a 20 minute walk from Palexpo but it took me 30 minutes of wandering around and being funneled to the single exit and a shuttle bus ride around the building to find the starting place to walk.

Thursday: I almost know my way around! I definitely know how to get to the correct area, and then ask, and I was able to sample several of the many, many sessions this morning. In this huge complex there’s apparently 1 pay phone, which only takes plastic, and a few people are queuing patiently - mobile phones are everywhere. Yesterday the doors to the wheelchair accessible bathrooms where locked. I checked today and they are open. I also found some other bathrooms labeled wheelchair accessible - at the foot of a flight of stairs.

I began at the plenary, listened for a while as heads of state made interventions about the importance for ICT and their concerns. I came back later for the general discussion where NGO’s could also make interventions.

I wandered through the exhibit hall and was delighted to see a Bhutan booth and to learn about their epost project. It can take five days for a runner to carry letters from one end of Bhutan to the other. The project enables a sender to write an electronic letter at one post office, have it sent to the nearest recipient post office electronically, and from their delivered to the recipient. Faster.

I had been reading an S as a 5 but did arrive at "Less privileged become privileged in the information society." There’s an open architecture in these huge halls, total background noise, music, drums, chants and microphones and headphones override all that. Mostly. The hall itself has a very high fixed ceiling, and then girders with little spotlights create ceiling of each room. One wall of each room has a glass door and several window panels. There are croissants and coffee and about 40 people.

The Israel Internet Association in 2002 established a web accessibility task group "The real victims (of the digital divide) are those with special needs: children with learning difficulties, senior citizens and people with disabilities." It has translated the W3C standards into Hebrew. There’s a broad understanding of access including ability to stop animations, change colors, enlarge fonts, change spacing, design with variable fonts. And a listening/talking virtual support. The divide is between central/peripheral; wealth/poor; majority/marginalized; general population/special needs. At the question time an angry Arab gave a disruptive intervention, calling the panel racist. The moderator did a smooth job of reframing the question in the context of the divide.

There is other anger at WSIS. Geneva03, media activist: "The WSIS is dominated by a repressive security agenda and by neoliberal objectives" (This group also subscribed all attendees, or at least me and many, to an email list of some kind and people who received the message replied and those messages went to everyone and you can guess the rest. It took two days to stop it.)

But Israel said it is also in a cyber war and needs to carefully protect information from unwanted access while at the same time it automates tax, health, and other personal information to allow ease of access and use by the end-user.

Re volunteerism, recruitment is not a problem, but volunteer maintenance and continued engagement is.

I went back to the plenary for the general discussion interventions by the NGO’s to try to get a sense of where the summit would end. There’s dismay from one source that worker’s rights haven’t been included. There’s one man standing with his back to the speaker during the ITU (the lead agency for the Summit) intervention and I’m reminded of that as a protest strategy. He’s actually a security guard.. If many in an audience did this, it would be a quiet bold statement that might disconcert. Could we adopt this is a pwd or People Who strategy?

ICANN: management of unique identifiers, protocols, ... Currently 55 million domain names, there exist enough domain addresses for 20 years, with upcoming system, enough IP addresses for each atom of the known universe.

"The US delegation made efforts to counter critics within the civil society movement who feel Washington has already ruled out any form of ‘digital solidarity fund’ to finance ICT development in southern nations. In an effort to smooth over the rift that has enlarged between North and South over this issue, the delegation proudly announced the creation of a 400-million dollar facility, designed to encourage U.S. investment in the telecommunications and IT sectors of developing countries. But the United States looks once again poised to shun the multilateral approach in favor of one-to-one arrangements. ‘We have found that by directly providing support to those people and those countries doing the right thing for their people, that this is the most effective means, said Gross.’ "

There’s smoking everywhere, in the bathrooms, in the exhibit hall, in the restaurants, ...

"Governments must be constantly reminded that they are legally required under the human rights treaties they have ratified to implement, promote and protect communication rights. ... Civil society has a key role to play in terms of advocacy for rights, in terms of monitoring and exposing rights abuse and in terms of educating and popularizing rights. Encouraging and facilitating people to assert these rights through different types of social action and to use them to realize the enourmous potential of both the old and new technologies of media and communication, are vital task for all concerned people."

Friday: Global Forum on Disability in the Information Society

Familiar from the New York UN Convention meetings, Kicki, Marta, Moira. Linda is here - I saw an email from her to others - but I haven’t seen her.

There are 70 - 100 in a large room, lots of blind, lots of wheel chairs, two signers (I don’t know which languages), head phones for translation (most with in English, openings in French). I put 35 WNUSP brochures on the information table; there are just a few left. I’ve asked those I spoke with from developing countries to reach out to People Who and ask them to participate. There was political support expressed by the Geneva government spokesperson. I was pleased that my high school French held for those simple remarks and I understood quite a lot without the headphones. The speakers inviting us to Tunis in 05 spoke French and their English and my French did not really make a bridge, but I also asked them connect me to People Who to organize.

Screen/text reader demo. Pwd must be included in the testing. Software developers want automated testing, usability without user input.

ISO 35, international standards organization, man-machine interface. The group establishes, and quickly, international standards. A number of countries belong. US’ ANS is a member. Power point with interface not readable by audience, techie reset, speaker set it back noting it was easier for him.

Database or CD, images of personal wishes/preferences, touch screen for pwd for whom this would be useful, examples were from intellectual disability .

Vodafone: accessible mobile phone, there’s a market in serving the excluded.

Bethel House, Japan, 2000 visitors a year, 13 teleconference sites connected all day for worker consultations, archives, hallucination and delusion contest. On going peer support for those employed. Social club first teaches small talk, hello, how are you, the weather, ... Presenters co-workers separated him from them by building a wall of corrugated cartons around his desk. When he said he wanted to drive UFO’s, he was told he needed a special license, followed the directions to the place they said he could acquire one, and found himself greeted by a doctor at a hospital.

I wonder how pwd and pwpd can put ourselves forward as a market for software developers.

A bit of the plenary: UN Permanent Forum on Indigenous Issues - references removed to their special concerns, as were the references to disability removed in Declarations. Then a sampling of a few sessions before returning to the disability day.

Information Technology in Human Rights, documentation software, search engine, ... Presentation is so far only visual words on a screen, while passive audience reads. Ugh!

Legal Issues of the Information Society - proprietary data protection, surveillance, privacy, ... hard to hear because of hall noise and planes. Yet this session was the fullest of all I’ve been to.

Shrum: "The concept of ‘re-agency’ is used in preference to ‘development’ to explain the priority of personal relations introducing significant constraints that must be faced directly to establish connectivity in developing areas."

Gage, : "The growing application of information technology in society, in both biological and computer networks, challenges us to understand a core issue in deciding future directions for our lives, our societies, and our environment: the relationship between identity and control.

"Information technologies are technologies of control. In biological systems, growth, repair and reproduction are controlled by exchanging information about identity, in the form of encoded instructions for protein synthesis. In human and technological networks, identity is central to decide what will happen, when, among whom, including and excluding whom, drawing upon named and unnamed resources, exchanging value among named and unnamed entities. In economic systems, based increasingly on computer networks as the infrastructure of exchange, the central issues turn on establishing identity, then trust, then exchange, then audit and reporting. How we understand these issues will determine the impact of future information technology on society."

I’m back at the plenary for an hour, listening to the country interventions. Security has stepped up. There are jets circling overhead (two were also there last night, when I walked back to my room). There’s another bag search for entering the plenary. Maybe there have been threats. Maybe someone very controversial is here.

Judy Brewer, Director of the Web Accessibility Initiative at W3C. Gold standard for web design,

Proposed Geneva Declaration on Accessible Information Society (DPI has posted draft 2, I'll send the URL separately, later.  There are still revisions after that draft.)

We, participants of the Global Forum on Disability in the Information Society, held on December 12, 2003 in Geneva Switzerland, declare in solidarity that

1. Persons with disabilities, as an integral and indivisible part of human society, must be included in all aspects of the information society and must be able to enjoy the rights of full participation free from all types of barrier, prejudice and discrimination.

2. Content of information and communications including ICTs, which play a crucial role in shaping the information society, should be made accessible to all including persons with disabilities, based on Universal Design principle and the use of assistive technologies.

By the time the discussion started, the last hour, the above had been expanded to 12 points and there was still language crafting. The pwd session ended at 6:15. The plenary adjourned around 6:30.

The creativity of some of the micro-projects, mostly with cell phones and wireless, delighted me. A letter carrier also carries a phone and sells usage to those on his route. A woman in a rural village buys a phone and service and sells usage to all those in the village. Fishermen use cell phones to find which pier has the best prices for their catch. Farmers find the going rates for produce before going to the buyer auction houses. A person buys a digital camera and sells/sends digital images from villages to families far away.

Geneva is on the Rhone river, too wide to easily cross before the industrial age. There is a large rock island in the middle of the river, allowing a crossing without technology, by laying a log across. So Geneva became a crossroads, an international trade center. And developed into a humanitarian Protestant city which led Woodrow Wilson to chose it for the site of the League of Nations and the natural successor the United Nations. The Rhone collects here into the largest lake in Western Europe. A fifth of Geneva’s land is public parks. Of the 44 roads out of Geneva, 42 go to France, only two to Switzerland, and only 4 kilometres of the canton of Geneva’s borders are actually with Switzerland. Land is scarce, buildings are tall, even the very early ones have several floors. The City Hall, built in the 15th century was ramped, for protection, and still there are interior ramps, not stairs to get from level to level. While the City Hall may therefore be accessible for wheelchairs, the old city is definitely not. All week the city has been celebrating Escala, the commemoration of pushing back the Savoienne invaders. Today there were parades, cannon shots, and the retelling of women’s heroism, how from the second floors of their homes they poured the always bubbling cauldrons of soup over the balconies onto the attacking soldiers. Hot soup on metal armor; imagine!

Visions in Process, Henrich Boll Foundation, Ed

"During the WSIS process the discussions on ICT security have shifted from the need for infrastructure integrity to a politicised agenda, characterised by military language and a stress on safeguards against possible terrorist threats. ... national security concerns rather than by concerns for the protection of privacy standards."

"Strife for political power and economic advantages has pervaded the discussion of single issues, from internet governance to intellectual property rights, and from proprietary software to media beyond ICTs."

I knew in advance that the disability community was distressed that language had not been included. I find here that also women, the indigenous communities, and others are distressed about what has been omitted. I think it would provide a strong front if these groups all asserted and lobbied together; I am not sure how the lobby was happening or where.

"Knowledge as a common good must have a higher status in the hierarchy of social values than the protection of private claims."

Charter of Civil Rights for a Sustainable Knowledge Society

"Limited intellectual monopolies, of which copyright is the best known, are powerful tools - and as such they should be used with great care. They wee invented for a different age and with different issues at stake; today’s information societies should therefore not simply reuse them - they will have to find new and appropriate forms. ... For thousands of years human creativity fared rather well without monopolies."

"Free software does go a long way towards making information societies equitable, non-discriminatory, inclusive, and open to all. ... Languages are the standards."   (We don't copyright English, charge for using the alphabet, ... S.)

"Community radio, television, and print media represent basic, but highly effective means to bridge the information and communication divide, as they apply appropriate local technology and knowledge to development and poverty reduction."

 I walked by WHO, the Red Cross, and the UN buildings during a break in today's drizzzles.  WHO's emblem has the caduceus in the foreground, a world map in the background, and is circled by a leaf wreath, Hygeia.