Vision – to bring services to people who stutter in the developing world.
As so often happens at conferences networking can stimulate some wonderful ideas. At the 2004 Congress for PWS experienced SLP’s David Shapiro and Peggy Wahlhaus discussed with International Stuttering Association Chair Mark Irwin and Stefan Hoffman (Chair of ISA Outreach group) how stuttering therapy services might best be bought to countries of the developing world. David’s model was “Medicines Sans Frontieres” and he wanted to pursue ideas for applying this model to stuttering services. A meeting in Perth which also included Dorvan Brientenfeldt, Moussa Dao, Joseph Lukong and Joan Girson began the process. Later group email discussions took place where it was decided to name the programme –International Speech Project –Stuttering.(ISP-S). The rationale was if funding was to be secured and recognition achieved, then the project had to have a broader appeal than simply stuttering therapy. It was decided it would be more likely to be favorably received by potential donors if the programme related to provision of general speech therapy services.
Once the decision on the name was made other issues were its structure and where and how to launch the project. Stefan Hoffman, Moussa Dao, Joseph Lukong and Mark Irwin collaborated to initiate an inaugural African Stuttering Conference in Douala Cameroon from 6th-8th October 2005, thinking that this conference would provide an opportunity to gain insights into needs in the developing world and to fund raising possibilities. This background information would enable effective future planning and make Douala the obvious place to launch ISP –S.
2. African Conference
Joseph Lukong as Conference Convenor and Coordinator General of the Speak Clear Association of Cameroon was responsible for conference management. Guidance was provided by the ISA through involvement of Mark Irwin, Stefan Hoffman and Moussa Dao.
From inside Africa there were delegates from 14 different African countries. Of course the main group came from Cameroon. From outside Africa the conference was supported by speech pathologists Anne-Marie Simon from France, experienced in work in Africa, two of her colleagues Sylvie Brignone and Cecile Couvignou, as well as David Shapiro (USA) and Susanne Rosenberger (Germany). In addition psychologist Peter Howell (England), geneticist Radha Upphala (India) and teacher Isobel Quick (Australia) also made conference presentations.
Anne Marie Simon was a key person in promotion of the event throughout Africa. She had many contacts as a result of previous work there. In addition others heard of it through her interviews on Radio France Internationale. Joseph Lukong liaised with Mark Irwin to produce a conference brochure and later worked tirelessly communicating via email with potential delegates from all over Africa, as well as creating media awareness in Cameroon. The ISA and BSA published details of the conference on their websites.
The ISA took up the challenge to financially manage the event. It sought funds from recognized aid agencies, embassies and churches without success but was successful in obtaining private donations directly and through affiliated member associations. Originally it was hoped that fund raising could be arranged to fully support travel, accommodation and meals for one delegate from each African country. In the end budgetary constraints meant we could only offer 50% air fare while fully supporting accommodation and meals. Delegates from 21 African countries were involved in discussions about attendance. Of these, delegates from 14 countries attended. Distribution of scholarship money raised by the ISA was managed in Douala by Mark Irwin, Joseph Lukong and Moussa Dao, after telephone and email links to ISA treasurer Hermann Christmann of Denmark.
Aims of Conference.
- Give information about stuttering.
- Give stuttering therapy.
- Give information about development of self-help groups
- Gain information about situation for pws in Africa
- Gain information about situation for therapists in Africa
- Gain information for fund raising possibilities
- Launch International Speech Project -Stuttering
Mark Irwin gave the following information to delegates and to the general public in numerous media interviews
- Stuttering otherwise known as stammering is more than just dysfluent speech. The hesitant speech or overt stuttering the listener hears is just the tip of the iceberg. Below the surface often lie feelings of frustration, shame and embarrassment which are accompanied by fear of social encounters. In addition there maybe varying degrees of covert stuttering, that is word avoidance, substitution and circumlocution which are used to hide the overt stuttering behaviour. A shy, quite child may be hiding a stutter and it is important for teachers to recognise this.
- The cause of stuttering is unknown although it appears to have a multifactorial origin with current research suggesting 70% environmental and 30% genetic aetiology.
- Treatment for the very young (before age 6) appears to be reasonably successful although thereafter, with increasing age, it seems recovery is far more difficult.
- Amongst other things it seems recovery from stuttering requires personality restructuring and a support network. Some people do not or cannot make the required changes and, rather than follow a recovery path, choose to move to a path of self- acceptance as a person who stutters. The International Stuttering Association regards either path as valid. In other words stuttering is a disability that can be managed with various levels of success depending on age, severity and support.
- The general public can support PWS by being a partner in the communication process rather than a judge. It helps if people listen well, smile and make eye contact.
David Shapiro and Anne-Marie Simon provided information to PWS and to health care workers in preconference workshops. Information was also given to delegates via conference presentations by all speech pathologists as well as by psychologist Peter Howell, geneticist Radha Upphala and teacher Isobel Quick. Many of these people also took part in radio and television interviews. (Credit must go to Joseph Lukong for publicizing the event so widely in Douala and ensuring such widespread media coverage.)
- Generally the situation in Africa for PWS is poor due to a lack of understanding and use of ineffective and physically harmful treatment techniques. Examples included a report from Salad from Kenya on how he was beaten vigorously on the back with a sheep’s lung as a treatment method. Joseph Nsubuga from Uganda reported incidents where children who stuttered had been killed in the belief they were possessed by evil spirits.
- Belief in witchcraft is still prominent in Africa and the local witchdoctor/ faith healer is used as a therapy source. Western style therapy exists to varying extents. Recognized speech therapy qualifications are available in South Africa and Togo. The Togo training institution has received funding from Handicap International and students receive specialist training in stuttering therapy from Anne Marie Simon. Other people have done what can best be described as auxiliary training either in France or in South Africa. Elsewhere psychologists treat stuttering. Sami Yasin from Sudan reported that speech therapists are unknown in his country.
- There are many international aid organizations, churches and embassies providing assistance in Africa but not directed to stuttering or speech pathology in general. Unfortunately none of those approached by the ISA or by the Clear Speech Association of Cameroon were able to help.
- Self help groups for people who stutter had been recently formed in Burkina Faso, Cameroon and Nigeria. The South African Speak Easy Association however was a far more mature organization. Formed in 1992 it held the 1998 World Congress of PWS.
The delegates indicated that they very much valued the opportunity to build networks with other pws and experts from within their own countries, from Africa, and from other countries in the world. Judging by the number of contact details exchanged this will be only the start of the ongoing development of a supportive network of people with a commitment to improving the situation for pws in Africa.
Expert information was shared in a two way process and knowledge deepened. From this we can expect the development of more self-help groups in Africa plus the provision of more effective therapy and training services. In addition a foundation has been set for ISP-S so that essential information and effective stuttering therapy might soon be bought to all people of the developing world.
Thanks are due to everyone involved in this historic event. A huge splash was made in the pond of stuttering awareness and understanding. The ripple effect from this splash will further develop the ISA mission of a world that understands stuttering.
3. International Speech Project –Stuttering Launch
ISP –S was launched on Friday 8th October 2005 at the African conference in Douala Cameroon. It has the general concept of developing self-help groups to liaise with specialist speech pathologists in providing information to PWS and the general public. It was felt that flooding developing countries with SLP’s (even if this was economically possible) would not be the most effective way of helping adults who stutter. Instead self-help groups could become the foundation for supporting the long term recovery of its members as well as supporting philanthropic visits of specialist SLP’s. The SLP’s , besides providing therapy, would also provide postgraduate education to the relatively poorly trained African speech pathologists and psychologists. Another priority was to lobby African governments to provide training for French and English speaking students in the established facilities in Togo and South Africa respectively. Later perhaps, when enough speech therapists in various African countries had been trained it might be possible to develop local education facilities staffed by people previously trained in Togo or South Africa.
4. ISP-S Update
A development committee comprising Mark Irwin (Chair) Stefan Hoffman, Joseph Lukong, Moussa Dao, David Shapiro , Anne-Marie Simon, Susanne Rosenberger and Peggy Wahlhaus was formed to implement the strategy outlined above. Input was later received from Joan Girson, Dina Lilian and Keith Boss. The committee operates as a subcommittee of the ISA and in close cooperation with the ISA Outreach Group chaired by Stefan Hoffman.
Specifically to date the following has been achieved
- Africa. Stuttering associations have now been formed in Burundi, Benin, Chad, Mali, Mauritania, Nigeria, Kenya and Sudan. Leaders from these groups are in contact with members of established groups in South Africa, Cameroon, Burkina Faso and Uganda. In addition there has been an increase in the number of Chapters of the Cameroon Association.
- India. Suzanne Rosenberger visited India and made contact with SLP’s and PWS. Keith Boss (UK) leads an Indian team which has worked with Indian SLP’s, PWS and government officials to produce an Indian stuttering website (www.indiastammering.com). Plans are well in hand to start TISA (The Indian Stammering Association) and many self-help groups through out India..
- Togo. Anne-Marie Simon and Moussa Dao recently visited Togo to work with PWS and speech pathologists. This project was a joint collaboration between the ISA and Handicap International. Numerous media interviews, a public meeting and post-graduate education all took place with great effect. As a result of its success a self-help association is now being formed and future collaboration with Handicap International is a real possibility.
- Kenya. Mark Irwin and Salad Tutana took part in media interviews in Nairobi. One interview in particular has been replayed several times on national Kenyan television giving much needed prominence to stuttering issues.
- Mauritius. Mark Irwin and Jim Caroopen worked together to conduct a public meeting from which the stuttering group “Parole Despoir” was formed.
- Reunion. (Ile de la Reunion). Anne-Marie Simon has conducted workshops for PWS and speech pathologists.
- France. ISP-S has been promoted to speech pathologists attending the conference of the French Stuttering Association (Association Parole Begaiement) in Toulouse, generating much interest.
- South Africa. South African University Departments of Speech Pathology have been contacted by Peggy Wahlhaus, Joan Girson and Dina Lilian with the intention of influencing them to train students from other African countries and to support ISP-S.
- Cameroon. Discussions have begun with a University in Cameroon regarding the setting up of a Speech Pathology faculty. Joseph Lukong and David Shapiro have cooperated in this effort.
5. Future Plans (continue with current strategy)
- Continue co-operation with the ISA Outreach group with the idea to form more local self-help groups.
- Promote ISP-S to the IFA with the aim to have more specialist speech pathologists volunteer to work with local groups in developing countries.
- Seek funding to support travel expenses of these volunteer speech pathologists.
- Influence universities in South Africa and Togo to provide training for students from other African countries.
- Influence African universities without a speech pathology department currently, to make provision for one in the near future.
6. Call for Volunteers
Anyone interested in either becoming a VOLUNTEER (either SLP or leader of self –help group) , or DONATING to ISP-S please contact Keith Boss.