FLYING WITH THE SPARROW People with Intellectual Disability in stories from Africa

1. FLYING WITH THE SPARROWPeople with Intellectual Disability in stories from Africa Nicola Grove Openstorytellers & Department of Language and Communication Science, City University nicola@openstorytellers.org.uk

2. About Openstorytellers • Inclusive company of storytellers • Co-run by people with label of learning disabilities (ID) • Link traditional legends and personal stories • Training, performance, resource development • www.openstorytellers.org.uk

3. INTELLECTUAL DISABILITY IN STORY The daft boys were also great panto fun - Bill Bumpkin..and Ben Bogtrotter.. were the Squire’s stupid servants, while LW played the loveable village idiot Billy Gosling, who had to be shouted at by the audience every time he was about to embark on another silly escapade… Review of Mother Goose pantomime Fosse Way Magazine, 9/1/2009

4. OUR RESEARCH AIMS • Explore a range of traditional stories from different cultures that have direct relevance to people with a label of ID • Work with storytellers and communities to develop empowerment through story • Promote the cultural identity and cultural exchange of people with a label of ID

5. Contribution of traditional stories • Stories show us that people with learning disabilities have always been part of the culture • They provide us with images and symbols we can explore, celebrate, challenge, develop • They present types - aspects of human character which can be owned by everyone, emphasising universality • The stories often reflect the complexity of the situations which learning disabled people face • The stories offer an imaginative and oblique way of confronting and exploring issues

6. Stories connect the storyteller with his or her own life; with the listener; with others in society and other worlds; with moral judgements; with the bigger cultural narratives which influence the identities of individuals and communities. Through stories we are exposed to metanarrative constructs about disability, which we can interrogate, challenge and change. Meininger 2008

7. Robin Meader, Artistic Director, OPENSTORYTELLERS I think that everyone in the world has the need to have a story, or we would be under a dark cloud. Sometimes people had a good story and something got in their way, like bullying, politics, anti-social behaviour or unhappy relationships. We sort out problems in stories and this can help us. I waslike Aladdin he always had to do a lot of washing, but one day he discovered he wanted to go somewhere he could find a magic lamp, and it's like me, feel like I really want to go out to a place to visit like a castle or a cave or something, and as he rubs the lamp a genie comes out with the three wishes, it reminds me of wanting to get a job and make a lot of money.…And then he falls in love with this girl and becomes rich, and to me it makes me feel like I want to go out in the world and talk to people.

8. Research questions (stories) • What stories do you know from your tradition that clearly feature people who are treated as though they have intellectual disability? • What stories feature characters or situations that reflect the situation or behaviour of people with ID in your culture? • What stories speak to the deeper experience of people with ID and their families ? • Traditional tales and personal experiences

9. Research questions (interview) • What is the traditional view of a person with ID in your culture? • Nowadays, what happens when a child or adult is identified as having an ID? • What would the typical pattern of their lives be like? • How do families feel about their children with ID? • How do others in the culture perceive them? • What issues arise for people with ID in achieving valued status within the culture • Do groups of people with ID come together • Are there organisations that promote people with ID in the culture? • Who are the people working with folk with ID in a positive way? • What do people with ID say?

10. Sources of information • 4 cities • Cape Town, Durban, Johannesburg, Pretoria • Khwa Ttu cultural centre San people • 21 people who told stories for a living • 14 black South Africans (¡Khoi San; Zulu; Xhosa;Sesutho) • 7 white South African storytellers. • 40 young actor/storytellers - Sibikwa • 4 schools(SEN): 6 parent/carers, 4 teenage pupils • CAAC university of Pretoria - 14 people with acquired brain injury; 1 mother, • Researchers attending IASSID conference • Numerous taxi drivers, guides, bystanders, tradespeople; Peace centre wardens • Books and internet

11. Disability references • 271 stories • 240 read, 31 told • 260 traditional, 11 factual • 10 references to disability (3.7%) • 6 references to stigmatising conditions (2%) • 5 clear refs to ID (2%) • Reported prevalence of ID prior to HIV • 2.9% (mild); 0.64% (severe) Kromberg et al. 2008

12. Calabash Children • A woman is unable to have children. She goes to the healer • who gives her seeds. The woman plants the seeds, which grow into gourds. She harvests the gourds, and stores them in her loft, apart from the largest, which she puts by the fire. When she is at work, the gourds turn into children and do the housework and prepare a meal. In the evening, before she comes home, they turn back into gourds. On the third day, the woman hides and sees what is happening. Now the children live with her. But the big one is slow and clumsy, he was burned by the fire and over cooked. One day she loses her temper with him and says she wishes he were a gourd again. Immediately this is what happens. The other gourd children sing him back to life and the woman asks for his forgiveness.(Tanzania.Told by Susan Williams, Johannesburg Story Circle, from a written version on the internet • by Aaron Shepherd

13. Disability constructs • To the extent the processes of narrative reconstruction can be traced (ie in non-western cultures) they seem to be concerned with asserting moral competence through interpreting the causes of disability rather than the process of living with it.. There is an emphasis on events preceding the onset of impairment and on moral relations to other people and spiritual beings. • Ingstad & Whyte 1995

14. Traditional story: How the cock got his feathers • A King has a son who was born dumb. He offers a reward to • anyone who will teach him to speak. Various stratagems are tried, including frightening him on hunting trips, and in thunderstorms. • A cock volunteers and takes the boy home with him. First he • takes the boy fishing with a calabash which has a hole in the • bottom. The boy cannot tell him what is wrong. Then he punishes • him for losing the fish, beating him with a whip until he bleeds – • the boy then bursts into speech and makes his way home, • wailing and complaining. The cock is given rich robes which • become his feathers. (Phebean ITeyami and P. Gurrey (1952))

15. Perceived causation • Ancestral curse • Illwishing • Punishment • Taboo breaking esp in pregnancy • Kromberg et al. 2008

16. Beliefs about disability I guess from my experience punishment of the family – the next level would be they did something wrong so they are paying – the actual person (ie if a person became disabled later in life). Very negative. In the Christian perspective it’s my gift, god is training me to give me this gift, the Jesus way, the family is blessed. (Professional storyteller T) You know Nicola, it is very difficult for us to think about changing these beliefs, because our culture teaches us to accept things the way they are. This is how it is. (Zanendaba Storyteller)

17. Lived experience I remember as a child how cruel we used to be.. Persecution, stoning, rejection, mothers say they can’t send them anywhere… The people move away as if we were aliens… A lot of people are still scared of disability, they don’t really know how to treat people - when they become more accustomed to it they will relax…

18. You’re bewitched You disgust me You die a dirty dog You did this to yourself You are useless You just have to kill yourself Useless thing Your parents’ punishment I can’t eat with you in a same plate Money maker You are not a human being What have you heard people say about a disabled person?

19. True story • A man Mama Pattie knew was crippled. Western medicine could not • help him, but he went to a traditional healer and recovered some • mobility. He went to a nearby village to visit some people. A woman • there was jealous of her husband’s second wife and had decided to • poison her. She wanted to test the poison, and she thought the man • would do fine as a victim as he was worthless and no-one would care • about him. She invited him into her house. He was very pleased • because this did not happen very often for him. She gave him a cup of beer with the poison in it, and he drank it. Then he left for home. • He began to feel terrible stomach pains and thirst. He sat down by • a river and drank and drank but it was no good. He died by the river. • When the woman heard, she was very happy. She celebrated with • a beer. But she was not a good housewife and she had not washed • the cup up properly – and this was the one that she took.. • When she began to have stomach pains she realised what had • happened. She felt guilty and she told people what she had done. • Then she died.

20. Transforming stories NG (in response to the story of the crippled man). Mama Pattie, this is a very difficult story  Mama Pattie Nokwe « If you don’t like the story, all you have to do is change it » • Such transformations can contribute to the search for a different socio-ethical construction of inclusion, which diminishes the power of sameness, embraces resilience, difference and transformation, celebrates stories and honours relationships of acceptance and friendship (Clapton, 2008)

21. Sibikwa suggestions Alternative endings She gets punished – she goes to hell She goes to prison He doesn’t die He goes back and confronts her and brings her to justice He goes back an d confronts her. He forgives her and she realises that he is worth something after all. She changes her mind about people with disabilities and becomes a good person.

22. Post discussion comments from Sibikwa

23. Locating the cockerel tale In another traditional story told me by Gillie Southwood, the lion wants a more powerful voice, and gets his roar when he is tricked into swallowing bees. From an empowerment perspective I think the message is about giving people challenges which enable them to discover the power within themselves to break through a barrier, even when this causes pain – rather than the more apparently obvious moral that dumb people can be made to speak by hurting or bullying them. (Grove, 2008)

24. Healers’ beliefs about origins of ID • 100 volunteers from Traditional Healers’ association (80 female) • 58% did not know - • ie they were honest about their knowledge base • Inheritance or illwishing more frequently cited as cause than taboo breaking (suggests external causation) • More nuanced insights into disability than are suggested from the list • Healers were actively interested and positive about working with the researchers

25. Open doors • Xhosa - initiation possible for young man with cerebral palsy; test is based on capacity to carry out task, not on impairment • Reported prevalence rates are lower when IQ and adaptive ability are used, than IQ alone (ie, there is a focus on what children CAN do) • Role for children with mild disabilities especially in rural/cattle cultures (indeed they are not necessarily seen as disabled at all)

26. The two sisters and the wealth box Two daughters, one intelligent, Her mother has died and her father has married again. Her sister is less intelligent. The first girl works hard and everyone loves her. Her sister pushes her into the river when they go to fill their water pots. She is swept across the river to another land. The first thing she sees is a sheep. It is weighed down by its long long hair, trailing on the ground, Shear me, shear me pleads the sheep. Of course says the girl and she takes the clippers from behind the sheep’s ear and clips his fleece. The sheep thanks her… .

27. NG What do you mean by intelligent? Anaya: The first girl is respectful, she listens. The second girl is impatient, not respectful. Anaya is Pattie Nokwe’s granddaughter and translator Ie, the underlying construct of « intelligence » relates to emotional and social skilfulness, rather than to reasoning and intellect Interrogating the story

28. Flying with the sparrow At a time of drought, the people’s prayers cannot reach the rain goddess, who is too far away. Vulture, dove and sparrow volunteer to fly up to heaven. Vulture takes dove on his back, dove takes sparrow on her back. Half way up the vulture tires and drops down, dove carries on, but tires, and it is the tiny sparrow who successfully reaches Heaven and petitions the goddess, who responds with a shower of rain. (Traditional Zulu, told by Muza Ntanzi from Khwakhayalendaba (House of Stories) Soweto)

29. « I’m going to help you to fly »response of nondisabled child on hearing the story, putting his arms around a friend and supporting him to raise them up

30. REFLECTIONS • There is clear evidence of people with ID featuring in legends associated with settled cultures - but less evident in hunter-gatherer tales, featuring animals • Stories carry multiple meanings which can be accessed at at different levels. There are questions about ownership of story, authority to tell and the cultural situation of stories • Culturally specific meanings are difficult to access from outside the culture - stories that are strange need unpacking with the insights of experts • Stories are dynamic, not static - once the story has been told to me, I can play with it

31. STORYTELLING EXCHANGE • An international programme for a storytelling olympiad (www.companyofcommonsense.com) • Openstorytellers are collecting legends that feature people with disabilities, with a protocol for using the tales in workshops • To contribute, email info@openstorytellers.org.uk with « storytelling exchange » in the message line