Report by Mark Irwin (ISA Board Chair) October 27, 2005

History: In February 2004 at the World Congress of PWS held in Perth Australia, David Shapiro and Peggy Wahlhaus discussed with me their idea of collaboration with the ISA to develop a program for bringing stuttering therapy to the developing world. A model for this initiative was the internationally recognized “Medicines Sans Frontieres” (Doctors Without Borders). Stefan Hoffman as ISA Outreach Committee chair was later involved in these discussions and it was decided to pursue this idea further.

There was a meeting in Perth and later group email discussions where it was decided to name the program –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 favourably received by potential donors if the program related to provision of general speech therapy services.

Once this decision was made other issues were its structure and where and how to launch the project. Stefan Hoffman, Moussa Dao, Joseph Lukong and I 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 and fund raising possibilities. This background information would enable effective future planning and make Douala the obvious place to launch ISP –S.

Attendees 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 Suzanna Rosenberger (Germany). In addition psychologist Peter Howell (England), geneticist Radha Upphala (India) and teacher Isobel Quick (Australia) also made conference presentations.

Promotion 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 me 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.

Finance 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 myself, 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

Information Given • Information was given to delegates via conference presentations by all the speech pathologists and by psychologist Peter Howell, geneticist Radha Upphala and teacher Isobel Quick. The general public was informed through numerous radio and television interviews. Credit must go to Joseph Lukong for publicizing the event so widely in Douala and ensuring such widespread media coverage. (Anytime I was interviewed, including a segment on the 7.00 TV news, my message was for the general public to understand stuttering is a disability that can be managed to varying levels depending on age, severity and support. The message for pws was to come out, not to be anxious, embarrassed or ashamed of their stuttering and join a support group as a means of helping themselves. • Stuttering therapy was provided to the delegates in preconference work shops conducted by Anne Marie Simon and David Shapiro • I gave a presentation on stuttering self-help groups –how to make them work to ensure they remain dynamic and open.

Information gained • 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. Unfortunately none of those approached by the ISA or by the Clear Speech Association of Cameroon were able to help.

Launch of International Speech Project –Stuttering After consideration of input from numerous sources the ISP –S was launched with a general concept of developing self-help groups to liaise with specialist speech pathologists to provide information to PWS and the general public. In addition the specialist SLP’s would provide postgraduate education to 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. A development board will be established to manage practical implementation of these ideas.

Summary 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. Finally as a visitor to Africa I found the hospitality shown by the local delegates to be outstanding, and would encourage others to participate in any future conferences.