EDAN
Ecumenical Disability Advocates Network
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From Harare to Porto Alegre

The World Council of Churches (WCC) has for many years carried the burden and concern for work with persons with disabilities but the priority given to it has differed from time to time. There has always somehow arisen individuals at different times whose commitment to the work has been out of interest and not mere duty and it is through the commitment of such people that the fire for this work has kept burning.


This explains the intermittent pattern of the work in the last thirty or so years.  Prior to the Harare Assembly in 1998, one such person was Evelyn Appiah who was in charge of lay participation towards inclusive community programme within Unit 1 : Unity and Renewal. Evelyn stood in for this work between the departure of Lynda Katsuno who was in charge of the work as a full time staff between 1984 and 1991 and the recruitment of Ye Ja Lee in 1994 through to 1996 when she too left for reasons of lack of funds. Evelyn kept the work going amidst her other duties in between the terms of the two members of staff and after Ye Ja left.

The participation of the ten disability advisors in the Harare assembly is principally attributable to Evelyn both in terms of advocacy and fund raising. A lot of work had gone in to the preparation for this participation but it still needed more support to give it the impact needed. On arrival in Harare, there were problems of access but even more serious, there were no plans for actual involvement in the mainstream activities or in such influential structures like the programme or the Policy Reference Committees. Although these people had been invited as advisors, there was no opportunity for them to give their advice. There was a tent provided for them to meet and consult but all they could do was to talk to themselves. Out of frustration, they became aggressive and reached out to the authorities and it was only then that actual involvement in the programme and Policy Reference Committee became possible.

Reflecting on the pattern of disability work in WCC, the ten did not have confidence that the work would continue and they were of the view that the fellowship they had began should not come to an end with the assembly. They therefore decided to form themselves in to an association which they called the Ecumenical Disability Advocates Network. The idea was to continue sharing experiences and to provide motivation to each other to carry out some advocacy work with churches and church structures wherever they came from. This was to be done through a simple newsletter and the group appointed one of them to coordinate the writing.

Without any idea as to how WCC would react to the idea or as to whether they would be interested in working with the association, the matter was shared with them. Although the response took time, it was very positive when it came four months later.  They had considered the idea and had found it workable to have the Network become part of WCC structures and to be managed by persons with disabilities.  At the time, the council work was organized in clusters and this aspect of the work was placed within the Justice, Peace and Creation team. It was to be a decentralized  programme to be hosted by an organization with interest and capacity to provide institutional support. The National Council of Churches of Kenya which had an already established disability desk was requested to provide the necessary support and 40 percent staff time to the work. They were approached and they expressed their willingness to do so. WCC was to pay for the 40 percent staff time and for an assistant to provide support to the staff for this work.

By June 1999, an agreement to set up the work in Kenya had been reached. Funds had been set aside on the understanding that the Network would meet and prepare work plans. The first step was to call together all the ten advisors to discuss and agree on the issues to be addressed, the structures to be set up and how to get the work going in the Regions. A one week consultation was organized in Nairobi in December 1999 and was able to study the history of WCC disability work, agree on objectives to guide the work and to set up the necessary structures in accordance with the guidelines provided by WCC. A three years strategic plan (2000-2002) was put in place by the staff in consultation with the JPC Coordinator and in accordance with the WCC plan cycle. Funds were made available for the implementation of the plan and although the plan was to be ratified by the Reference Group, work started in earnest as from the beginning of 2000 following the guidelines and issues identified at the Nairobi consultation. The Reference Group met for the first time in August 2000 in Geneva, went through the strategic plan and approved it. It also laid the grounds for the theological discourse work by planning the details of the process for the development of the Interim Statement.

All went in accordance with the plans during the first two years of the programme. We had enough funds for the programme work, had a vote for support to the regions in terms of travel and communication and there was also a travel vote for the programme staff. Four different Regions were visited during these two years. There were two meetings of the Reference Group and two central committee meetings in which we participated. The entire team of coordinators alongside with other invited participants who were to assist in the development of the Interim statement met for a second time in Catigny, Switzerland in October 2001. However, external and internal forces were beginning to affect the work of the Council in General and EDAN as a Programme of the Council had also to be affected.

As it will be recalled, the aftermath of the September 11, 2001 terrorist attack on the World Trade Center and the Pentagon in the United States captured the entire World attention for quite some time. The world grieved in fear as President George Bush threatened to take military action against Afghanistan which was considered the haven of the terrorists and the host country to Osama Bin Laden, the considered mastermind for the US attack.

Looming in the air at the same time was a global economic recession which had suddenly been accelerated by the US attack. As we were in Catigny, one of the manifestations of this worsening economic situation was the announced bankruptcy of the National Swiss Air. No sector seemed to have gone unaffected by all these economic ills. WCC found itself in a serious financial shortage as a result of falling investment values, less income from partners and falling levels of its reserves. Although the Council was in the middle of a three years planned activity cycle which had began in 2000, it had to go back to the drawing board with major cuts on personnel and programme funding for 2002 which was the last year in the plan cycle. EDAN was not spared the cuts but the worst was to come in the plans for the next Cycle (2003-2005). The plans brought with them a major reorganization which did away with some of the programmes and drastically reduced others. Examples of such major changes included doing away with the cluster system with all regular programmes being placed under one director. Some of the teams which operated separately were brought together and this meant loss of jobs for some people and what seemed demotions for others who headed teams which were merged with others. The Regional Relations Team under which all Regional Desks operated was not spared these changes. The Desks were put under what was renamed Diakonia and Solidality. Some of the major changes here included the re-location of the Pacific and the Middle East Desks from Geneva to their respective regions. By the time of the Central Committee of August-September 2003, the Pacific Desk was already operating from Fiji. The Middle East Desk was not as yet operational as there was no staff person to get it going. The previous staff had resigned amidst all these changes. A new member of staff was hired as a replacement but before she got settled in Lebanon, she left the job leaving the council to start the recruitment process all over again. This did affect EDAN work seriously because we had just finalized plans with the new staff to organize a regional consultation to help us train and identify a new coordinator for the Region.

The 2003 changes in the Justice, Peace and Creation (JPC) team, in which EDAN is situated were not major compared with other teams. The team leader remained Dr. Aruna Gnanadason who remained very supportive of EDAN all through the difficult period. One significant change was the transfer of the indigenous people Desk under Eugenio Poma from Geneva to Bolivia to operate under the auspices of the Latin America Conference of Churches.  Another change was the abolishing of the JPC, Women and Youth Advisory Groups and their replacement by a single commission on Justice Peace and Creation (CJPC). EDAN was represented in the new commission by Rev. Noel Fernandez from Cuba. The various Reference Groups that were responsible to the Advisory groups either ceased to exist or took very different form. In cases where they were retained, they became purely advisory without any managerial or executive powers. EDAN retained a Reference Group with some changes in accordance to some guidelines agreed upon within the JPC. By virtue of being the EDAN representative in the new commission, Noel Fernandez became a member of the constituted Reference Group.  

The Decade to Overcome Violence was transferred from JPC and the former staff with whom we had established very good working relations moved to Faith and Order. We were however, able to re-establish relationship with the new DOV staff person and our Representative, Razaka Manantesoa was incorporated in to the DOV Committee which made it possible for us to continue making inputs in to the work of the Committee.

It is significant to note that amidst all these changes, EDAN found itself in a very difficult situation financially. Our funding was reduced by a third in 2002 and to less than a quarter of the 2001 level in 2003. As a result, a number of activities planned in 2002 had to be cut down while no programme activities including our Newsletter were funded in 2003. Our original funding allocation in 2003 was CHF 50,000 (Fifty thousand Swiss Francs) only but this proved totally inadequate and was increased to CHF 100,000 (One Hundred thousand Swiss francs) later in the year. This amount which still remains our allocation was only enough for our administrative expenses.  We were able to stay afloat during that first year because we had some savings in our Nairobi account which had accumulated over the last three years. We have had to fund raise for some of our operations in the subsequent two years. Admittedly, the idea of funding our administration was very helpful as it ensured that the office remained afloat and was able to buy time as funds were raised. It has been difficult to survive under these conditions but this has helped us to identify other ways of working. The programme has over the last two years been able to carry out a number of activities through either collaborating with other WCC programmes or in fundraising directly for specific activities.

Another significant move related to the Nairobi office. Due to pressure of work, the Consultant opted to take an early retirement from his regular job with the National Council of Churches of Kenya (NCCK) in March 2003 to concentrate on EDAN work. EDAN continued to operate under the auspices of NCCK as per the WCC arrangement.  Although this meant taking EDAN work on full time basis, NCCK  continued to assist in paying a full salary to the Consultant until January 2004 when WCC was able to take over.

Working under the Auspices of NCCK while no longer a staff there was considered limiting and this led to new discussions between WCC and the All Africa Conference of Churches (AACC) to enter into cooperation in disability work. This was in line with the WCC decentralization process where they were to place their work under the cover of Regional Ecumenical Organizations. It was also felt that EDAN would have greater impact and visibility operating under a Regional body. A memorandum  of  Understanding between the two bodies was signed  and EDAN  moved its offices from the National Council of Churches of Kenya to be hosted at the AACC headquarters as from June 2004. EDAN staff payroll  was subsequently moved from NCCK  to AACC with effect from January 2005.

The most significant event in WCC between the two Assemblies was the retirement of Rev. Dr. Konrad Raiser after eleven years in the highest office in WCC and the appointment of Rev. Dr. Samuel Kobia to replace him as the New General Secretary. It was, of course very difficult to imagine WCC without Rev. Dr. Raiser and this was very clear in the emotional send-off ceremony that took place at the Bossey Institute in August 2003.   Although he is greatly missed, it was a very welcome move for WCC to have a General Secretary who had clearly identified himself with EDAN as was witnessed in the Global Network meeting in Catigny in October 2001. His interest in EDAN work was made even more clear by visiting the Programme offices in Kenya only a month after his appointment.  This interest has all through been sustained as evident through his willingness to give time to listen to what the programme is doing whenever the programme staff visit Geneva.

ACHIEVEMENTS


The achievements of the Network against the objectives set in Harare can be summarized as follows:

To maintain the fellowship forged between diverse members of the WCC assembly disability advisory group at the Harare 8th Assembly

The disability advisers at the 8th WCC General Assembly have remained the backbone to the work of EDAN. They have remained of one accord in terms of purpose and operation. It is from among them that the Regional Coordinators are drawn and they have transformed themselves into an organ we now refer to as the Global Network which helps to continue the vision through sharing and fellowship. Besides keeping in communication, the group has met three times since Harare. They met in Nairobi Kenya in December 1999, Catigny Switzerland in October 2001 and Lunteren, Netherlands in October 2003. The fourth meeting is planned to coincide with the EDAN Pre-Assembly conference in Porto Alegre in February 2006. All these meetings were among other things used to share what is taking place in the Regions, to prepare plans for the two years after each of the meeting and to evaluate the work of the coordinating office. These have been very energizing moment when each of us has been challenged by what others are doing.

In addition to the global network meetings, the Reference Group has met twice in Geneva, once in Bangkok, Thailand and once in Stockholm, Sweden. This is a small group that has assisted the staff to envision the operations and to set goals that have continually guided the work of the Network.

Through the work of the Regional coordinators and other contact persons, Regional Networks have been established in most of the Regions. Some of the Networks have proved very vibrant and active. The best example has been Latin America which has carried out the most number of activities. It has endeavored to maintain good relationship with the Regional Ecumenical Organization, National Councils of Churches and member churches of WCC in the Region. Its operations have proved that the best way to make any impact is to coordinate closely with the existing church structures. Elsewhere, contacts have been maintained with All Africa Conference of Churches, The Christian Conference of Asia, The middle East Conference of Churches and the Conference of European Churches. We have also maintained contacts and relationship with the National Christian Council of Churches in USA and their affiliate National Disability Committee. Some work has been carried out in conjunction with the Caribbean Conference of Churches. All these Regional Ecumenical Organizations have been visited by EDAN staff at one point or the other.

We have had some problems in Pacific region which have made it not possible to have a Network there so far. Discussions with the WCC Regional office in this respect have been going on for sometime.  The Acting Coordinator to whom we had appointed this work has had difficulties in carrying out work in that region as she came from outside the region all the way in Korea and did not therefore have the necessary grassroots contact and support. We have now identified a possible volunteer coordinator from Fiji, a person with experience in working with both the churches and the secular disability movement. A consultation will soon be planned to set the way for the establishment of an operational network. We also suffered a set back in Middle East where, though the work began very well in conjunction with the Middle East Conference of Churches who helped us in identifying a volunteer coordinator, Elie Rhabani who was the youngest among all our coordinators had personal problems which led to his resignation. Staff changes both at the Middle East Conference of Churches and the WCC Middle East Desk made it difficult to follow up Elie’s replacement but this has now been overcome with the appointment of a new and enthusiastic WCC Middle East Regional Desk staff. A consultation is planned for May 2006 to set the grounds for our operations to be re-engineered.

We have maintained a quarterly bulletin, EDAN Newsletter through which we have shared the work and the experience of the network not only among its members but also with Churches, Regional and National ecumenical organization as well as a host of national and international disability organizations. The Newsletter has proved an important communication tool with all the Regional Networks receiving copies and making contribution on what they are doing in their respective Regions.

To engage in theological reflection on the issue of disability which may provide a foundation on which the churches engagement may be secured

In terms of theological engagement and reflection, EDAN with the assistance of Faith and Order worked over a period of three years to come up with a WCC policy statement “A Church of All and for All”. This document was commended to all member churches by the WCC Central Committee in its August 2003 meeting for study, reflection, feedback and action. The document highlights the fundamental theological issues that affects persons with disabilities and which, if addressed would challenge the church to become holistic and inclusive in its relationship to disability issues. The document which is now available in English, French, German and Spanish continues to be circulated to member churches, individuals, national and regional ecumenical organizations. The document is also shared with secular disability organizations for their reflection. 

In order to stimulate discourse on this interim statement, EDAN has worked with Mission and Ecumenical Formation team of WCC to develop a study guide that will be used along the Statement in bible study groups in churches to help them reflect on disability as a church agenda. A draft is now available for pre-testing and will soon be circulated.

Realizing that greater impact would be achieved if disability concerns were addressed at the ministerial formation stage, EDAN and the WCC Ecumenical Theological Education Desk in the Mission and Ecumenical Formation team has embarked on engaging theological institutions in disability discourse. This has been done through the development of a co-curriculum in disability studies to prepare ministers at the training stage for pastoral work with persons with disability.  A prototype curriculum which is subject to adaptations by different institutions was produced in August 2004 through a major consultation with representatives from select theological institutions. Included among these were Saint Paul’s United Theological College in Kenya, Asia Theological Seminary in Philipines, United Theological College of West Indies in Jamaica, Stockholm School of Theology in Sweden and the Lutheran Seminary in Brazil. As a follow up of this work, two other consultations to pre-test the document have taken place in Africa and a third one will take place in India. In the meanwhile, two of the colleges that worked on the curriculum taught it for the first time in the September 2005 Semester. These are Saint Paul’s United Theological College in Kenya and Stockholm School of Theology in Sweden.  

To work with and periodically advice WCC on its work and programs to improve the conditions affecting the disabled in the churches globally

One of the concerns of EDAN has been how to make disability a concern not just for the Justice, Peace and Creation Team but also to impact on other departments and teams to take disability as a cross cutting issue. In this respect, we have worked with Faith and Order Team; Ecumenical Theological Education, Scholarships, Conference on World Mission and Evangelism, Health and Healing, Ecumenical HIV and AIDS Initiative in Africa,  Mission and Ecumenical Formation Team; Decade to Overcome Violence; Bossey Institute; Regional Desks in Diakonia and Solidality team; UN Representative Office within the Commision on Church in International Affairs; and Economic Justice, Women, Youth  and Caring for Life projects within JPC team. Working with these programmes of the Council has been very rewarding in two different ways. First, they have through this interaction taken disability concern aboard in their thinking and actions. Secondly, whereas EDAN funding has been very limited, these programmes have funded different activities at Regional levels, which could never have been possible.

EDAN's work has also been greatly enhanced by financial assistance from other ecumenical development agencies and church organizations. Key among these have been ICCO of Netherlands, Bread for the World of Germany, Lutheran World Federation in Geneva, Norwegian  Church Aid offices in Nairobi, Christoffel Blindenmision of Germany and the United Church of Canada. 

To deepen the process of co-operation with and among the churches, national ecumenical bodies and regional ecumenical organisations in respect to inclusion and full participation of persons with disabilities in their missions

Our secretariat in Nairobi is very small and without the cooperation of Churches, National and Regional Ecumenical organizations, little would be achieved. In this respect, we have continued to deepen cooperation with these structures to enhance our work. As already mentioned earlier, central to this cooperation has been the Regional Ecumenical Organizations, which are the regional base for our work. Best cooperation has so far been achieved with the All Africa Conference of Churches who are now our official host in Nairobi.  This regional body was the first to provide opportunity for the participation of and a presentation done by EDAN in their General Assembly in Cameroon in November 2003. Latin America Conference of Churches was the first Regional Ecumenical Body to organize an EDAN consultation in July 2001 in Quito, Ecuador and has since remained very supportive of EDAN work.

Caribbean Conference of Churches welcomed a team of EDAN delegation and conducted a very elaborate tour of disability programmes and initiatives by both churches and secular organizations in both Jamaica, Trinidad and Tobago. The delegation had very fruitful discussions with various churches and church related groups on how disability work in the region could be taken forward.

The Conference of Churches in Asia in conjunction with WCC Asia Desk has organized and financed two different disability consultations within a period of two years in Thailand. In Addition, they provided opportunity and financed participation of more than ten persons with disabilities who included EDAN staff in their General Assembly in Chiang Mai, Thailand in April 2004.

The European Conference of Churches has already established links with our Network in Europe and there is great potential to work together and especially to reach parts of Eastern Europe where we still do not have any impact.

Links are still being forged with the help of the WCC Regional Desks to initiate discussions with Pacific and Middle East Conferences.  Consultations are planned to take place in these regions after the WCC General Assembly to create a cadre of disabled advocates to maintain relationships and to initiate activities in the Regions.

We have also worked with many Councils of Churches especially in identification of participants in our various activities. Contact with churches is mainly through our regional network coordination and though slowly, we are making some impact. We will need to strengthen regional work especially to influence inclusion, participation and active involvement of persons with disabilities in the spiritual, social, economic and structural life of the church.  

To broaden the spectrum of inputs into the process of information gathering in support of disability concerns

Gathering and dissemination of information has been part of our core business. Our earlier idea was to set up an information depository at our secretariat but on embarking on it, we realized that even if we keep a lot of books here in Nairobi, there access to other people who need them from different regions will still be a problem. We have built up a small collection for our reference at the secretariat but we have continued to share the knowledge we have on sources of information through our quarterly Newsletter. We have made referrals to many who have approached us for information that we do not have and we will continue to do so. We have also circulated major documents such as the Interim statement and this we will continue to do.

In addition to the quarterly Newsletter, EDAN has made a number of publications. Most note-able is our book, “Interpreting  Disability” authored by Arne Fritzson and Samuel Kabue and published by WCC within the Risk Book Series. The publication is now in circulation and is available from WCC publications department.

The January 2001 ' Ecumenical Review '  Journal published by Ecumenical Theological Education Desk of WCC was dedicated to articles written by EDAN members and their associates, all of who were persons with disabilities.

The July 2000 JPC Echoes Magazine was also dedicated to articles by EDAN  members or their appointed writers who in all cases were persons with disabilities.

EDAN has also recently contributed two articles and a book review to the Journal of  'Disability, Religion and  Health' published by Howard Press in United States. One of the articles is on the healing Mission of the Church and the other is on the WCC work on disability.

To symbolise by its initiatives the willingness and capacity of the disabled to help further the disability agenda in the life of the church globally

Coordination and envisioning of EDAN work has remained the responsibility of persons with disabilities. The Harare team has remained united and actively involved in the achievements of the objectives, which they set for themselves. A number of our coordinators in the region have shown a lot of dedication to this work and have brought in many others to assist in driving this agenda to the churches. Although all planning has been done by these dedicated people through the Reference Group and the Global Network team, we have done our best to involve the church and other agencies at the detailed grassroot planning and implementation level

UN Disability Convention: A significant aspect of work with non-church actors has been our participation in the process of the development of an integral international comprehensive convention on the promotion and protection of the rights and dignity of persons with disability at the UN. During the August 2003 Central Committee, this process which had began in 2002 was a subject of discussion especially in the Policy Reference Committee II. Churches were called upon to urge their Governments to support the process and EDAN was requested to find ways of getting involved in the process. On studying the matter, we found that there were two possibilities for our participation. We could have participated as non-governmental organization as WCC through its observer status. On the other hand, there was a possibility to participate as part of a government delegation and this gave us the opportunity to make intervention on the floor, something we could not do as observers. We approached the Kenya government who agreed to incorporate us in their delegation on condition that we would meet all our expenses. We found this acceptable and that is how we have participated. EDAN has participated in four sessions of two weeks each where wide consultations and negotiations have been going on. The EDAN Caribbean Regional Coordinator Rev. Gordon Cowans participated in one of the sessions as part of his country delegation under the same condition of having to meet his own expenses and EDAN did assist in this. Our first session to participate was jointly financed by the church commission on international affairs and JPC. Subsequent participation has been sponsored by United Church of Canada and the Norwegian Church Aid in Nairobi. We received a lot of support all through from the WCC UN and New York offices in terms of logistics. The last session of this UN work was to close just before the commencement of the WCC General Assembly and this made it difficult for us to participate. It is anticipated that there will be at least one more session and EDAN will endeavor to participate.

To analyze and address the relationship of disabilities to systematic  violence, war, and human rights violations

Our input in addressing systematic violence has been through our participation in the activities of the church’s Decade to Overcome Violence (DOV). The programme was represented in the DOV Committee by Razaka Manantenasoa as recommended by the global meeting at Catigny in 2001.  She attended all the subsequent meetings with the result that very good working relations with DOV has now been established. It is planned that DOV will be working closely with EDAN during the 9th Assembly in Porto Alegre especially in planning a “Mutirao”  on Violence and Disability. EDAN has been in search of ways to make DOV activities visible in its work while ensuring the essential future as churches in reaching reconciliation and peace. One contribution that has been made is that of preparing a bible study on disability and violence which will be published in the DOV series of bible studies. EDAN participation in DOV has been valuable because it has opened up wider horizons in thinking about violence and disability. General trends in violent situations have been analysed and connections with disability proved evident. Disability has been put in the agenda of DOV. As a result of this, EDAN had started to plan a process of conducting case studies on the relationship between disability and systematic violence, war and human rights violations with the intention to help develop education materials on the effects of violence on persons with disabilities. The staff changes in DOV momentarily distracted that process but we intend to focus on it after the Assembly and the current DOV staff are quite receptive of the idea. In the meanwhile, we have already started to collect stories on persons with disabilities who have made significant contribution to creating a culture of peace and non-violence.

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