The 8th Helen Keller World Conference and The World Federation of the Deafblind General Assembly

3 to 7 June, 2005

Tampere, Finland

Final Report

By: Päivi Rissanen, Heikki Majava, Tuija Lehtonen, Seppo Jurvanen

1.1. Background

The purpose of the HELEN 2005 project was to organise the "8th Helen Keller World Conference and the World Federation of the Deafblind 2nd General Assembly" in Tampere, Finland. The events took place on 3–7 June, 2005.

The first Helen Keller World Conference was arranged in 1977 in New York, USA. After this the conferences have taken place at four-year intervals in Germany, Bahrain, Sweden, Japan, Colombia and most recently, in New Zealand in 2001. In the Colombia conference in 1997, the decision was taken to establish the World Federation of the Deafblind (WFDB), to serve as the global federation of deafblind people. The founding general assembly was held in New Zealand in 2001. During the discussion on the venue of the 2005 conference, the only strong candidates were Spain and Finland. On the basis of research and discussions, the WFDB and the Finnish Deafblind Association decided to organise the conference in Finland.

The Finnish Deafblind Association has been actively involved in international activity. The presidents of Nordic deafblind organisations have met regularly each year. The idea of setting up a European organisation for the deafblind was introduced during these meetings. The decision to establish the European Deafblind Union (EDBU) was passed in 1999 in Tampere, at a meeting of the Nordic presidents. The EDBU held its first general assembly in 2003 in Denmark.

Before this, the Finnish Deafblind Association was involved in other international activity associated with deafblindness. However, such organisations as the Deafblind International (DbI) and the European Deafblind Network (EDbN) are primarily organisations for those working with deafblindness, and the influence of deafblind people themselves in these organisations is limited. Because of this it was thought necessary to establish and maintain international organisations and fora for the deafblind people themselves.

The Helen Keller World Conference is the only worldwide conference at which the deafblind people themselves speak, discuss and work to improve the participation and opportunities of the deafblind people, as well as for their human rights, and in which they themselves are in charge of the contents and organisation.

The 8th Helen Keller World Conference was organised jointly by the Finnish Deafblind Association and the World Federation of the Deafblind WFDB. The scientific programme of the conference was decided by the WFDB, while the Finnish Deafblind Association was responsible for practical conference arrangements. The Association also produced an alternative programme for the duration of the WFDB General Assembly. The official conference language was English. The patroness of the conference was Mrs. Tarja Halonen, President of the Republic of Finland.

The conference planning and implementation was managed by an international and a Finnish planning committee. In August 2004, the international planning committee consisted of Stig Ohlson (Chair), Lex Grandia, Daniel Alvarez Reyes and Seppo Jurvanen. The secretary of the international planning committee was Charlotta Göller. The Finnish planning committee consisted of Seppo Jurvanen (Chair), Ulla Kungas, Tuija Lehtonen, Kai Leinonen, Heikki Majava, Anita Palo, and Leena Sulonen, representing Tampere Conference Service Ltd. At this stage, one full-time employee was hired for the project. This was Ms Päivi Rissanen, who started her work as project co-ordinator on 1 August 2004.

1.2. Objectives

The immediate objective of the project was to create an event at which deafblind people from all parts of the world would be able to meet each other without obstacles. The conference theme was "Our right to be deafblind with full participation in society". The development objectives were inherently linked with the content-related objectives, i.e., the human rights of deafblind people. The intention was that the presentations in the scientific programme would present as broad a picture as possible of the rights of the deafblind to such things as information, communication, education, work, free mobility and leisure pursuits. The topics of the scientific workshops were divided into four areas: human rights; communication; technology and social support; national / international / individual rights. By disseminating information, reviewing good practices and presenting the thoughts of the deafblind as widely as possible, it was hoped that the rights of the deafblind all over the world would be promoted.

The purpose of the several elements of the alternative programme was to underline the spontaneous participation of deafblind people. Several exhibitions were designed to promote the activity and work of Finnish deafblind people.

As regards the conference size, the objective was to attract about 300 participants. The aim was also to gain both national and international visibility for the event. Particular emphasis was laid on the participation of people from developing countries, and numerous grants were applied for to facilitate this.

2.1. Time, venue and services

The time selected for the conference was 3–7 June, and the venue was the Tampere Hall. The Tampere Hall was for the most part responsible for the conference facilities, equipment, services and catering. Professional congress services were purchased from Tampere Conference Service, which managed, among other things, hotel reservations and arrangements, facility and restaurant reservations, contacts with participants (registrations and confirmations, payment transactions, lists of participants) and transport. Tampere Conference Service assisted with the planning throughout the project.

2.2. Financing

The chief financing body for the conference was the Finnish Slot Machine Association. Financial support was applied for and received from the following bodies: the Alfred Kordelin Foundation, the Finnish Folk High School for the Deaf, the Service Foundation for the Deaf, the Finnish Federation of Visually Impaired, the Finnish Ministry of Education and Culture, the foundation Stiftelsen Emilie och Rudolf Gesellius fond, the Finnish Ministry for Social and Health Affairs, the foundation Stiftelsen 7:nde mars fonden, the Finnish Cultural Foundation and the foundation William Thurings Stiftelse. A significant share of the conference funding consisted of participation fees. Revenue was also created by the sales of exhibition space to businesses in the field.

Support for the travel and accommodation costs of participants from the developing countries was applied for from the Abilis Foundation and the Finnish Ministry for Foreign Affairs. The Abilis Foundation granted its support to the WFDB. The grant from the Foreign Ministry was channelled through the Finnish Deafblind Association. The grants to participants from the developing countries were treated as separate from the actual conference budget.

Partners were also found among local actors. The Liisanpuisto and Karonen school in Tampere helped to implement the music workshops by loaning materials. The Evangelical-Lutheran Parishes in Tampere arranged an evening blessing with interpretation on Saturday, 5 June.

2.3. Project organisation

The project organisation consisted of the international and Finnish planning committees. The Finnish planning committee had six meetings: on 1 September, 13 October and 9 November 2004 and 19 January, 30 March and 27 April 2005. The meetings regularly reviewed project finances, state of implementation, lists of tasks, schedule, personnel resources and communication. The international planning committee met at the Tampere Hall on 12–13 March 2005. The planning committees functioned as the decision-making bodies in the project organisation. The actual implementation was the responsibility of the Finnish Deafblind Association. The World Federation of the Deafblind participated in controlling the implementation of decisions.

The practical arrangements were divided among several persons as follows: Kai Leinonen was in charge of contacts with financers and sponsors. Heikki Majava was in charge of the budget, the assistant resources, the commercial exhibition and the interpretation arrangements. He was also responsible for the international camp of Finnish deafblind people and acted as compère during the conference. Päivi Rissanen was in charge of arrangements for the scientific programme, of receiving and processing the abstracts, of conference presentation material and other printed matter, of documenting the applications for financial assistance, of arrangements for the participants from developing countries, international correspondence and the content of fund applications.

To plan the social programme for the conference a cultural committee was set up, consisting of Kai Leinonen, Heikki Majava, Anita Palo and Päivi Rissanen. In its meetings on 28 September and 8 November 2004 the committee decided that the art and cultural programme during the conference would commemorate Antti Jäkälä. The ensemble Teatteri Törmäys was invited to appear at the opening ceremony. Kari Hyötylä and Anu Mikkola were invited to appear at the closing ceremony. It was decided that art workshops and exhibitions would be arranged at the Tampere Hall.

2.4. Staff

The project employed one full-time worker, project secretary Päivi Rissanen. Heikki Majava, Secretary for Organisational Affairs, Tuija Lehtonen, Information Officer, and Kai Leinonen, Executive Director, participated in the project organisation in addition to their ordinary duties.

The employees of the Central Office of the Finnish Deafblind Association and of its Resource Centre in Tampere and Rehabilitation Centre in Jyväskylä took part in tasks during the conference. Similarly, the Association's Regional Counsellors from different parts of Finland contributed significantly to the success of the conference. All in all, about 20 employees of the Association managed sales desks, art exhibitions, supervision of volunteers and IT support.

As regards personnel resources, the aim was to employ deafblind workers whenever possible. The art exhibitions were managed by exhibitions co-ordinator Leila Lappea. Art workshops were led, among others, by Aatos Ahonen, Leila Lappea, Paula Lahti and Russ Palmer. Sini Immonen acted as interpreter. Together with Sanna Tuomaala, Tuija Mustonen acted as counsellor at the International Camp.

The Via Sign Language Sector Cooperative arranged the personnel required by the platform interpreting of Finnish Sign Language and International Signs, speech-to-text interpretation and description. Under Via, the interpreter co-ordinator of the conference was Nina Nalli. She was responsible for conveying material to the interpreters and acted as the liaison between spoken language interpreters and sign language interpreters.

The personnel required for Finnish-English-Finnish interpretation was arranged through Tampere Conference Service.

Assistants were recruited from educational institutions in the field: 10 students of sign-language interpreting and 14 students of sign language instruction from the Rovala Folk High School in Rovaniemi. Volunteer members of the Finnish Deafblind Association from the Tampere region and elsewhere in Finland also acted as assistants. Visual- and hearing-impaired young people also worked as assistants during the conference. The assistants worked at the first aid point, information point, lecture halls, exhibition spaces and cloakroom, and also acted as guides during meals and elsewhere in the Tampere Hall according to need.

2.5. Information

At the early stages of the conference project, information tasks were managed by Katri Pyykkö. She prepared an information plan and set up the conference website. Information tasks were also temporarily managed by Heikki Majava.

By August 2004, the conference already had a logo, the first circular, a poster and a website. After the project co-ordinator started her work in August 2004, the first circulars marketing the conference were sent to about 70 locations abroad and 170 addresses in Finland, on the basis of a list furnished by the WFDB. In September, the conference was announced to organisations in the field. Conference announcements were published in the DBL and the NUD bulletin. In December 2004, the second circular was posted to 95 locations abroad. The conference website was kept continuously up to date by Information Officer Tuija Lehtonen.

As the conference drew nearer, media releases were distributed as widely as possible: first in March, as the paper topics began to be fixed, and thereafter in May, before the conference was opened. A release in Finnish was sent not only to the main national media, but also to the local media in Tampere and to all periodicals in the field of social and health affairs, for example. The English release was sent to international news agencies active in Finland and to international journalists accredited in Finland. The same releases could also be found on the websites of the Association and the conference. In addition, the conference was repeatedly publicised through the e-mail lists of the Finnish Centre for Health Promotion and EUCREA and through the internal web bulletin of NKL. The members was informed of the conferences on the e-mail discussion areas, through the Association's publications and on its activity calendar.

Before the conference, journalist Raili Karisaari designed the Association's presentation material for the conference, edited the conference publications in Finnish and Braille, and designed the overall visual appearance of the exhibition catalogue. The Information Officer and the project co-ordinator planned the audiovisual recording of the conference for a subsequent publication as VHS and DVD recordings.

The pre-conference information mostly consisted of replies to individual inquiries. All in all, thousands of inquiries were received from other countries. As the conference drew nearer, the Information Officer was in personal contact with the Tampere media both by phone and e-mail.

During the conference, the information officials documented events by audio recording and notes. The number of electronic media releases during the conferences was five.

2.6. Programme

The conference programme was divided into two parts. On 3–5 June, the actual Helen Keller Conference with its scientific programme took place. On 5–7 June the World Federation of the Deafblind General Assembly and its alternative programme took place.

2.6.1. Opening ceremony

The conference was opened in the Small Auditorium of the Tampere Hall on Friday, 3 June 2005. The opening was attended by practically all of the 407 participants and the volunteers then present in the building. The conference was officially opened in signing by Ulla Kungas, Chair of the Finnish Deafblind Association. The greetings of the conference patroness, the President of the Republic, Ms Tarja Halonen, were read out by Kai Leinonen, Executive Director of the Finnish Deafblind Association. The third opening address was given by Stig Ohlsson, President of WFDB. The opening ceremony culminated in the performance of Teatteri Törmäys, consisting of deafblind people, who activated the whole audience in signing.

2.6.2. Scientific programme

The scientific programme was divided into plenary sessions and workshops, and those interested were asked to submit abstracts by November 2004. The deadline was later prolonged until February 2005. A total of 33 abstracts were submitted for the scientific programme, of which 30 were approved for the workshops. After cancellations and changes, the number of plenary speeches was 5, and a total of 26 presentations were given at the workshops. The topics covered numerous areas related to the human rights of deafblind people.

2.6.3. General assembly

The second General Assembly of the World Federation of the Deafblind was held on 5–7 June 2005. Before the General Assembly, a meeting of the representatives from Africa and Latin America was held in Tampere.

The material for the assembly was sent to Tampere by the WFDB independently. The assembly was attended by 37 countries and 37 delegates entitled to vote. Hundreds of other conference participants also attended the assembly without participating in the decision-making. The new Executive Council elected for the WFDB consists of the following people: Lex Grandia, Denmark, President, Sonnia Margarita Villacrès, Ecuador, Vice President, André van Deventer, South Africa, Secretary General, Gunborg Lindström, Sweden, Treasurer. The regional representatives elected were David Shaba (Tanzania, Africa), Satoshi Fukushima (Japan, Asia), Sanja Tarczay (Croatia, Europe), Beatriz Vallejo Londoño (Colombia, Latin America), Jeffrey Bohrman (USA, North America) and Jan Scahill (New Zealand, Pacific region).

2.6.4. Social programme

The social programme of the conference included a get-together party on Thursday, 2 June, a reception by the City of Tampere on Friday, 3 June and a Finnish Evening in Viikinsaari Island on Monday, 6 June. The leisure meeting point for the conference was Ravintola Telakka, located close to the hotels, which was re-named "The Deafblind Pub" and proved popular indeed.

2.6.5. Art exhibitions and workshops and other alternative programme

Throughout the conference, 5 different art exhibitions were open at the Tampere Hall, all under the general theme: "Antti Jäkälä – Man Behind the Joy of Life". On Sunday, parallel with the beginning of the WFDB General Assembly, art workshops were organised for all those interested. In addition, a "Room of Silence" and a "Room of the Senses" were arranged at the Tampere Hall.

2.6.5. Commercial exhibitions

The commercial exhibition included five exhibitors: Alva (Holland), Service Foundation for the Deaf (Finland), Nokia (Finland), Näköpiste - Polar Print (Finland/Sweden) and Omnitor (Sweden). The exhibitors also demonstrated their products in association with the conference. Presentation material was brought to the conference by several organisations, including Abilis (Finland), Eurospan (United Kingdom), Helen Keller National Center (USA), NUD (Denmark), Vision (Holland), Örebro (Sweden), SEDAD (Bangladesh) and Deafblind Uganda (Uganda).

2.7. Personnel resources

Those in charge of coaching the volunteers were Tampere Conference Service and Heikki Majava. During the conference, the volunteers were supervised by the regional counsellors of the Finnish Deafblind Association. Jaana Marttila was in charge of the ten students of sign language interpreting. Teija Tsutsunen was in charge of the 14 students from the Rovala Folk High School. The employees of the Finnish Deafblind Association managed various duties independently and also supervised volunteers during the conference. Tampere Conference Service and the employees of the Tampere Hall were available during the conference. The total number of personnel during the conference was about 60–70.

2.8. Material resources

The facilities at the Tampere Hall were modified to suit the participants' needs. Rows of seating were removed from the Small Auditorium for persons using wheelchairs and laptop computers. The stage was raised to improve visibility. Dark backdrops were placed at the back of the performers' stage. The modifications to the Small Auditorium caused some extra cost.

An Internet connection was available to the participants at a specific location at the Tampere Hall.

The Finnish Deafblind Association stood for the cost of most of the conference publications. The works of art and crafts exhibited and on sale were produced by deafblind people. The conference pack included sponsored gifts, such as pens, refreshing towelettes, hand cream and sweets. For the conference packs, Liisa Huttunen knitted over 400 small woollen gloves in the shape of the international "I Love You" symbol. For VIP guests, the Iittala glass factory donated 17 small Savoy vases.

3.1. Number of participants

The final number of those registered was 430, of whom 9 cancelled their attendance and 14 did not show up. Thus, the total number of participants was 407 persons from 44 countries. The number of deafblind participants was 124, that of interpreters / guides / assistants / family members was 184 and that of professionals 69. The number of invited guests was 14, the number of exhibitors 6 and that of members of organising committees 10. The target groups, i.e., deafblind people and various professionals within the field of deafblindness, were successfully reached.

3.2. Success of programme

Excluding a number of last-minute cancellations, the conference programme was implemented almost according to plan. Attendance at the scientific programme was active. Both Finnish and international experts, most of whom were themselves deafblind, presented current information on deafblindness, as regards both practice and research.

The Second WFDB General Assembly was the first General Assembly after the founding General Assembly. This was the first Assembly to be conducted according to the rules and byelaws approved at the founding General Assembly. At the same time, meeting routines and practices were tried out and developed. The meeting of a worldwide organisation is very important for the identity of the deafblind and has political impact.

The get-together party on Thursday, 2 June, attracted a large number of participants. Unfortunately, problems with the sound system prevented a full enjoyment of the programme by participants on two floors. Moomintroll and Snufkin made the acquaintance of several participants during the evening. On Friday, 3 June, Teatteri Törmäys was well received by the audience at the opening ceremony.

The popularity of the art workshops varied. While Russ Palmer's music workshops were filled to capacity, some others were perhaps less actively attended. The visibility of the art exhibitions at the Tampere Hall could have been better: among other things, the number of votes for the best sculpture in the Sculpture to Touch exhibition remained fairly low. The "Room of Silence" arranged by the church was well received, as was the "Room of the Senses" arranged by the students of the Rovala Folk High School.

During the Finnish Evening in Viikinsaari on 6 June, spirits were slightly dampened by the chilly weather. However, coffee and sausages cooked over open fire, a meal of grilled salmon at the restaurant, the Letkajenkka danced at the pavilion and the performance of the Laulavat kädet [Singing Hands] chorus improved the atmosphere. Students from Rovala successfully instructed the visitors in Finnish sauna traditions. Those returning on the last ferry were blessed with the sight of the midnight sunset.

At the closing ceremony of the conference, Kari Hyötylä mimed himself into the hearts of the audience. The same was true for Anu Mikkola, who recited her own poetry at the close of the General Assembly. By popular request, Teatteri Törmäys gave another performance on the final conference day.

The commercial exhibition reached most of the participants. During breaks, the conference participants could examine the latest products and services of the exhibitors, directed to deafblind customers.

3.3. Finances

The conference revenues were very positive. The revenues from participation fees amounted to 67,000 euros. Grants and donations from various foundations consisted of 65,000 euros, and the grant from the Finnish Slot Machine Association was 100,000 euros. The total conference revenue was 238,886 euros.

The conference finances show a deficit of slightly under 15,000 euros. The main reasons for the deficit were interpretation costs, which were higher than expected, and the modifications to the Tampere Hall facilities required by the conference.

3.3. Publicity

On the opening day of the conference, the event was noticeably covered by regional media. The Tampere-based national daily Aamulehti published a lengthy article on the mobility of a deafblind person in the city. The regional TV unit of YLE interviewed the FDBA Chair Ulla Kungas for the national sign-language news. A camera crew recorded parts of the opening ceremony, and the item appeared both in the regional TV news and in the national TV news broadcast around six o'clock. A cameraman from the local channel TV-Tampere recorded the atmosphere at the Tampere Hall before the official opening, and the conference made an item in the channel's main news at five. In addition, part of the interview made with the regional TV unit was also broadcast through the regional radio channel, with the Chair commenting on the insufficiency of interpreter services (in the voice of her interpreter), and the item, together with its lead-in, was broadcast three times during the Saturday. The conference also made an item in the national sign-language news on Sunday and Tuesday.

The media was interested in art by deafblind people and the exhibition Sculpture to Touch. A journalist from the local YLE radio unit gave a 10-minute report on the exhibition on Friday night. The suburban newspaper Hervannan Sanomat also published a story on the art exhibition (18 June), as did the local papers Koillis-Häme, Tamperelainen (8 June) and Kangasniemen kunnallislehti (9 June) and the web magazine Airut (4 July).

After the conference, the 4 July issue of the Näkövammaisten Airut web magazine, published by the Finnish Federation of Visually Impaired, focused on the Helen Keller World Conference. The editorial was written by Seppo Jurvanen, and the lead story by Tuija Lehtonen. Photos taken by Raili Karisaari during the conference were well placed in the story. Stories are also going to appear in the customer bulletin of the Tampere Hall and the community work newsletter of the Evangelical-Lutheran parishes in Tampere. The Christian weekly Sana will publish a commentary by the Information Officer on the rights of the deafblind. The association of Swedish-speaking visually impaired in Finland has requested a photograph taken at the conference for publication in its newsletter.

Issue 6–7 of the Tuntosarvi, the newsletter of the Finnish Deafblind Association, was an exceptional 32-page double issue (the normal number of pages is 20), and was completely dedicated to events at the Helen Keller World Conference. Thus, even members who could not be present at Tampere were able to gain an overview of the conference soon afterwards. A condensed Swedish version of this issue was also published.

3.4. Feedback

Feedback received during and immediately after the conference was mainly positive. Different nationalities expressed the wish to have interpreting in their own languages. The meals served by the Tampere Hall were commented on by some. Conference information on the website could have been better kept up to date. Information about the interpretation arrangements did not reach everybody before the conference. Comments also concerned the operation of the induction coils in the auditorium. Some of the feedback also commented on the signposting of and guidance to various locations.

After the conference, the Finnish Deafblind Association received several messages from different parts of the world. Some of them expressed thanks for a successful conference. Others proposed co-operation between national organisations of the deafblind.

The foremost impression of the organisers was that the conference was a great success, as regards both its arrangements and the programme. The marketing efforts were successfully targeted. Instead of the expected number of 300 participants, over 400 arrived at Tampere. By April 2005 it was obvious that the get-together party would have to be relocated in a larger room in order to provide seating for all those registered.

The conference served to disseminate practices which promote the participation of deafblind people and communication. Descriptive interpreting, its established status in Finland and the corresponding need for it in other countries was strongly noted during the conference. The conference served as an excellent venue for setting up contacts. Representatives from the deafblind organisations in different countries were able to make extremely useful contacts with persons from other deafblind organisations and from disability organisations in general.

The relatively lean project organisation appears to have worked well. Despite the fact that several variables changed in a manner which could not have been predicted, the organisation was able to respond rapidly to changes and to find workable solutions.

The reception of information by the conference participants was confused by the fact that material sent by the interpreting co-ordinator to the interpreters also ended up in the hands of outside persons. In the future, the registration form should request a separate, even personal e-mail address for each interpreter. Overall, the availability of co-ordinated internal information immediately before the conference was too scant.

As regards impact, the greatest drawback was that the intended national and international visibility was not attained. In contrast, regional visibility was good. Similarly, in the field of deafblindness, both among the deafblind people themselves and among people who work with them, information on the conference and its topics was very well disseminated. In particular, description, which was implemented for the first time during the conference, received plenty of attention, and will probably form a part of all future deafblind conferences.

The conference objectives were not attained in every particular. As a whole, however, the conference was extremely successful.