Rough draft report: Working Conference on Developing Disability Civil Society through the Internet - using the Convention on the Rights of Persons with Disabilities

Cambridge, MA September 26, 2008

Sylvia Caras, PhD

I’ve been an advocate interested in inclusion, mutuality, leveling the field, concerned that we use language of grace and clarity. It was a privilege and pleasure to chair several of the International Disability Caucus plenaries in New York, and to participate actively on several email lists while we developed good language for the Convention on the Rights of Persons with Disabilities. And now the treaty is firm about access (Articles 3, 4, 30 and in particular 9 and 21). My city, my county and my state are resolved to support US involvement, and I’ve done my part to shift my country in that direction. I feel satisfied about my own role in furthering the work of the international disability community. Now I will focus on access to knowledge in the context of information and communication technology, giving the internet my highest priority, and paying the most attention to process.

Last spring I was invited to a one day working group to be convened by the Harvard Project on Disability and the Berkman Center to think about how better to use the internet to implement the Convention on the Rights of Persons with Disabilities. I was excited by the opportunity to brainstorm without anchors or opposition but the invitation did not include expenses. I was disappointed that it was now too late to get a free award air ticket and I was able to use saved points for a convenient hotel, so I decided to invest the money to attend.

I was drawn by the opportunity to visit Boston in the fall, to revisit Harvard Yard and the buildings and shops and streets around Harvard Square (I spent a summer at Harvard, and later used the mainframe computers in William James to use Fortran to write a program for Mass General to score the MMPI.) and to spend the Jewish new year with my sister in Brookline and attend services at Temple Israel (the congregation our parents were members of). It’s 5769 and sitting beside my sister I realized she is 69 and I now have a sure way to remember what Jewish year it will be! (She wasn’t as struck by that coincidence as I, but number-loving I am cherishing that bit.) Lots of memories of events from long ago, and a sense of closure. The hotel was disappointing, musty, and I’ve lost my appetite for camping in hotel rooms. At home I record all television before watching, so at the hotel, when I watched a little of the bailout discussions and the news and my index finger kept wanting to fast forward.

The 10 - 2 meeting was held under the "Chatham House Rule" which facilitates free discussion by allowing people to speak as individuals, and to express views that may not be those of their organizations. Results of Chatham House meetings are freely available to all, but not attributed to any particular participant.

We were 30, seated in a square, spent the first 40 minutes on introductions, and later lunchtime provided a chance to network. Most were there as part of their jobs, paid for their time and travel. It was a good opportunity for network and leverage but excluded the grass roots, at least the unfunded grass roots.

Some of us also had dinner together the day before and the night of the meeting. One evening we compared traffic in Vietnam, China, and the U.S. Afterwards I began thinking that orderly traffic really is a derivative of respect for the rule of law, that it represents stability, order, and perhaps more population rootedness.

The output is to be a White Paper, focusing on how to use the CRPD to facilitate use of the internet by people with disabilities. Michele Magar, ED of RatifyNow, will author. We people who cope with mood swings, fear, voices and visions have been using the internet for a long time. I had expected to take notes and report back to you after our working group meeting. I have some notes from the day and more from preparing for the day and am unable to organize them into any simple structure. Because starting from CRPD leads me back to more global justice and rights issues that apply to all marginalized groups and forward to concerns about digital literacy and information overload - the disability specifics, except for a few, don’t stand alone. Poor, rural, undeveloped areas, urban pockets, all have barriers to knowledge access. Only a very small portion of the knowledge deprivations relate specifically to disability barriers. What I’ve found is that access issues for most left out groups are similar - insufficient resources for participation on an equal basis.

One way or organizing all my ideas is to start with the public health model and bullet some general socioeconomic, cultural and environmental conditions, social and community networks, individual lifestyle factors and then move to the networked environment - content, applications, connectivity, physical components and emphasize disability where there are exceptional issues.

I didn’t take my laptop to the meeting, nor did I log in during the week I was away. Now it has been overwhelming to organize these notes and impressions, to do this task that no one but me really expects me to do.

I decided to use this report-back to share what new I heard and include my own ideas. Some of this those we follow People Who and technology will have read before. Some is vague and some specific, all tumbling around in my mind.

It rained hard for several days, so one night on the way back from dinner, I rode with others in the accessible transfer service van that Harvard provides - a user makes an appointment, can ride from home, to university building, to restaurant, to airport, ... I was impressed at the convenience of the resource. For the rest, I borrowed the large umbrella my hotel provided!

As I walked back and forth, I was struck by the commercial expansion of University surrounds, how polite people were, held doors, offered directions, ... I was interviewed by a roving reporter about the framing of the bailout, and was glad of the opportunity to speak my mind about rhetoric that frightens and disempowers.

I thought a lot about better framing, shifting our presentation of ourselves away from our needs and towards our contributions, and my more immediate interest in inclusiveness and building community. In retrospect I think when we were drafting the treaty the International Disability Caucus focused too much on legal input and language and didn’t take advantage of the opportunity to bend the UN etiquette and participate as compelling individuals with real lives, interested in sports and jobs and families.

And I think this meeting could have focused more sharply. People who come to meetings like this have passed the first hurdle; I think we need to ask what is wanted for the first actions, go beyond high level policy language to first actions.

I’ve inserted my notes and thoughts public health and a network headings and want others to complete the material. These are points to think about and discuss, not developed projects.

Public Health

Global governance, socioeconomic, cultural and environmental conditions

Value rights and justice and personal sovereignty and dignity

Don’t take for granted that development is good. Both in the developing world and in developing the community who gains? Who is hurt?

Technology is a catalyst and there will be unexpected consequences. Providing tools and means gives space for activities that have not happened before in ways that haven’t before been used.

Many of rights hinge together and that attention to one will lift all. Electronic infrastructure for all new and remodeled development is a baseline change that it would be useful to implement.

The concerns of people with disabilities are cross-cutting, effect the developing world, people who are poor in the developed world, people who are excluded, people who are getting older. Information and communication technology, with access for all, uplifts everyone. People with disabilities can take the lead, use changes resulting from CRPD to open the gateway for everyone.

The new World Wide Web Foundation want to lower the barriers of accessing the Web for people who are not able, today, to find accessible and usable information -

Update accessibility legislation to include accessibility to technology and electronic information, websites, cell phones, ...

 "There are forces at play within all organizations that seek to create complexity and dependency. These forces can be entrenched, but must be uprooted if we are to truly embrace all the promises that the Internet offers." (McGovern) For people with disabilities, are In place organizations hijacking CRPD to enhance their own primacy with funders?

Should WHO take the lead on "Health-Related Aspects of IP or Trade Issues", so that there is a balance between "trade-related" and "health-related" agendas?

What are the roles of litigation, markets, grass roots movements, legislation, multi-lateral agreements and the media?

The Convention on the Rights of Persons with Disabilities emphasized ‘no new rights’, so expanded in known, predictable ways. But there wasn’t a global view of what inclusion might look like, nor any effort to build coalitions and support by examining *who else* might benefit.

Social and community networks

People can develop their human rights identity and capacity through the internet and other forms of information and communication technology

Should disability be mainstream - so that there is a more holistic approach to taking down barriers - or should there be a single issue identity lobby? Can we do both? (Many of the outreach concerns relate to other groups too.) Why value a disability community? Can we be specific about outcomes?

People want to be where others are, yet initial inclusive organizing quietly loses the grass roots (global organizations, political campaigns, ... )

Are there sustainable, decentralized and self-organizing models? Does community scale? Consider steady-state dynamics.

Networks have no mechanisms for getting along, no reasons not to splinter

for example (for example IDA leaving the Caucus as soon as CRPD opened for signing and California’s no longer ‘stake-holder driven’ Mental Health Services Act).

What isn’t working; where are the holes, the disadvantages?

Does community scale? Limit communities to 75- 150, steady-state dynamics?

Using needs assessment tools prioritizes by measuring against existing paradigms. Broad inclusion, tapping the wisdom of crowds, using participatory methods gets different results.

Individual lifestyle factors

Jobs first. People with disabilities have the right to contribute and participate. Hence accommodations.

Communication Platforms

Networked environment

Transparency.   It is opaque to suggest that academia is neutral. It’s better to disclose.

Digital literacy - computer basics and posting grammars - better than a global set of links (needs staff to properly maintain) is search tips? how to search better, part of

otoh - Internet Society Swiss U G - who knows

‘Send me the link’ society - the power of the link.

Highest growth rates in areas such as China, Russia, India and Brazil

There’s inadequate distribution of information about lists, resources, unclear definition of purposes (information, practical tips, advocacy/change, each other/support, ... ), not enough attention to design and usefulness (accessible and respectful use of web pages, emails; awareness of connection costs in some countries; McGovern design tips/values; mobile friendly), indiscriminate sending of attachments, images

What about privacy and profiling? - . Digital natives have a more relaxed perspective about intellectual property rights and personal identity (Fair use means my use; if I don’t profit it’s fair use. I don’t consider that if it were my property being used I might lose.)


"So Web 2.0 and social media still need management. They rarely mature on their own. Discussions need to be moderated and channelled. Processes that allow the cream to rise to the top must be put in place. The bad ideas need to be weeded out." Wise management is needed. How to moderate, update, delete as well as add ... ? "A website without limits is a dump." "But the managers are not the only clever people in the room anymore. The room is much bigger and it is speckled with cleverness. To manage in the Web 2.0 world is to converse, to listen, to be honest and upfront, to collaborate, to moderate, and constantly watch out for the trends and patterns that always emerge when many minds mingle and mix in the network." Gerry McGovern

Robust self-and co-regulatory organisations only develop where their design and dynamics take a multi-stakeholder approach as their basic principle." Relative lack of hierarchy, "compromise is the core democratic activity" "Issues become what is democratic representativeness, how deal with informal tyranny, imposed advocate virtue, distorted communication, forced consensus, democratic accountability, and strategic efficacy, quoting others, ... "

Think about strategies like gradual inclusion (snowball, invitations (Gmail)), moderate, use software that can regulate so that few posters do not dominate, have generally agreed behavior, scale - representative, affinity layers of matrices, include voting mechanism, include netiquette

"Participants are expected to be self-organizing, responsible for developing essential skills, and able to assume changing roles as circumstances dictate. Leadership is cooperative and fluid, and leaders change frequently: If someone is stuck, someone else will step up and take over."

Any gateway would become exclusive.


Provide information to enrich individuals, provide connection to each other

Distinguish between information and knowledge; access to information is insufficient.

All public information websites must be accessible and that private/commercial websites be made accessible (use wording like that for building accessibility - new, yes; remodel, try; ... )

Relax intellectual property regulations.

Who is the audience? What will the value be?

Low levels of digital literacy not unique to people with disabilities - marginalized, undeveloped, poor, needing translation (plain language, audio, signing)

Are destination websites useful? (I was surprised by the idea of going directly to a site for information, for medical information - I go to Amazon for books directly, Google News and Google Finance, and log into my own banking sites, but I would search before I’d go to a source site for a new subject, a new medical diagnosis, ... Destination sites seem to favor hierarchy, current paradigms.)


Make language of the advocacy less lawyerly (legal capacity) and less generic (human rights, social justice) and more ordinary and specific, actual, particular, real, tangible

Lighten up - images of people with disabilities as heroically overcoming, disadvantaged, generate negative frame as rightless, unworthy; change frame to person with a dream, like everyone else, who, oh, by the way, needs an accommodation to get there ...

Think about language that reflects that each of us deserves concrete personal sovereignty (not autonomy) dignity (not capacity)

Media - position ICT as a media sub-category, train readers and advocates in messaging


Open source

Work towards resolving information overload (community-based voting (how does the brain filter? not multi-task but speedy switching) - digg, Amazon, Google serach algorithm , You Tube, ...), filters, concentrated - Google news, collaborative - Amazon

Tagging should reflect both context and (s/b be broader than medical) and

community - w mesh, geography is community, affinity is the very use of the computer

Standards are the implementation of policy. Health record standards are happening without much grass roots. The behavioral health community and HL7 spent much effort to develop standards for behavioral health medical records and a very detailed spread sheet is available. But no policy paper was created that summarized and explained the values behind the standards.

Translation - First to plain text, then to translation saves $$$

Examples I think are good: LISTSERV (,, Wiki, Google Docs and Cloud.


Make universal service ubiquitous.

To reduce telephone and wireless connection costs to the end user, it would be helpful is state laws encouraged telephone company competition, and efficiency in bandwidth costs.

Optimize use of mobile web, solar - leverage connections by using mesh neworks (OLPC)

Physical components

Universal design for accessible technology including cell phone/internet.

Open source.

Support information and communication infrastructures that are seamless - "universal, affordable, open, accessible, reliable, democratically accountable and protective of civil liberties." (Clement)

"Access is not as important as ensuring that individuals have the ability to create and participate on the local level. Access in the conventional sense of the term is too often a passive term for many developing countries – facilitating the ability to create and participate on the local level is a much more active way to engage

individuals in developing countries." Rishab Ghosh

Know the high costs of upgrading to current versions of text readers and the computers to go with them.

Legacy computers are OK for learning word processing and some other software and, an obstacle to using the internet, especially the web.

Some small next steps to consider

Build more coalitions. The opportunities for people with disabilites are often combined with a focus on intellectual property rights, open-source, right to information, broadband for all, ... . There's an opportunity for strong coalitions.

Partner with a service org focused on assistive technology (there’s a veterans organization in San Jose, CA; a User Group in Switzerland, ... )

Infiltrate an existing global organization in apolitical way (Sister Cities, for instance)

Develop an information literacy for people with disabilities; tie it to media literacy

Think about an accessibility checker as easy to use as a spell checker

Think about the UN experience, perhaps use something like Google Docs or a Wiki. Write the history of the International Disability Caucus.

Provide web pages with a continuum of accommodations

Provide web pages about knowing how people with disabilities cope, practical tips, ...

Coordinate input about disability and electronic accessibility and infrastructure? ITU, OECD, IGF, UN-GAID, WHO/DAP, GUDC, G3ICT, ... - there are a great many structures involved

Build an audience on YouTube (plus text, plus sign), 0 second spots on challenge/right


People Who Access to Knowledge Policy:


Benefits of information and communication technologies for people who experience moods swings, fear, voice and visions: