5.2 Your turn
5.2.2 Structure of analysis: assigning meaning
This section will provide the informant data analysis in the following format. Part 1 will concentrate on a synopsis of each informant interview presented in the first person. It will incorporate their first person utterances. Part 2 will follow with an interpretation and discussion of the data of all informants, constructed thematically using an interpretivist approach which was discussed in detail in Chapter Three. The research process I have followed resonates with the following three key dimensions: ontology, epistemology and methodology as outlined by Terre Blanche and Durrheim (1999).
The three parts, which have been explained in Chapter Three, are interconnected in this study in the following way. To reiterate,I have taken what I hold to be my truth (my ontology) and understanding that truth and the nature of knowledge (my epistemology) to select the
appropriate methodology. How I understand my truth, my ontology, is important for my research because situating it in autoethnography warrants clarity about how I know my truth to be true, my epistemology. In foregrounding these positions, I can catapult myself into
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finding out more about the world of experiences of other parents (pertaining to access, schooling, Down syndrome) whilst connecting my own place within it.
The way in which I go about unearthing information, my methods, and the suitability of these methods resonates with my methodology. Once I had collected information about parents ‘or guardians experiences of access to schooling for their children with Down syndrome, I interpreted to make meaning of what was shared by drawing inferences between the information and some (abstract) pattern alluded to by Aikenhead (2008). I aimed to
understand the phenomenon of access to schooling spaces further through the meanings that parents assign to them in their chronicles using an interpretivist lens. I was searching for meaning, particularly the social and historical meaning informants assigned to their experiences of the phenomenon of access to schooling retrieved from memories, of experiences of places and spaces situated in the past but articulated in the present.
In the main, chronicles are understood as stories that comprise a temporal ordering of events and within this transient context; I endeavour to signify the experiences in a personal, cultural coherent and plausible manner. The time and place and space in which informants tell their chronicles linking features from different timeframes (past, present, future ) and a capsule of a fleeting moment, is referred to as a ‘threshold’(Churchill & Churchill, 1982) in that it captures and crystallises an interpretation in that moment in time. My decision to look at the transcripts of the informants as filial narratives with an interpretivist lens afforded me the following:
access to maternal kinship with mothers of children with Down syndrome; emotional
connectedness of anger, joy, frustration; humanness of experience of time, order and change;
acceptance that it is a representation of a life experience at a given moment. With the context of a common phenomenon, which is access to schooling, the particulars of human experience of how parents negotiated that process, is illuminated in my qualitative autoethnographic study using an interpretivist approach (Ayres, Kavanaugh & Knafl, 2003). It was through this process of additional encounters and perspectives that I extended, knowing more about the phenomenon.
Each informant’s explanation of her experience occurred on a unique timeline and setting,
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none in the same year, place nor in the same suburb. All children represented by the informants were born between 1989 and 1995, a period marked by significant political changes in South African history as people prepared for the milestone first democratic elections the following year, on 27 April 1994 as illustrated in Table 3.
Between 1989
and 1995
Political Event
1989 “Nelson Mandela responds to a memorandum from President P.W. Botha in which he states that the ANC would end the armed struggle if the organization was unbanned, political prisoners released and troops are withdrawn from the townships”.
“13 December, Nelson Mandela and F.W. de Klerk meet for the first time to discuss the country’s political future”.
1990 “Nelson Mandela is released from prison”.
“The government puts forward the 'Clase Models', which set out the conditions under which white state schools can admit black students”
“2 February, President F. W. de Klerk makes a speech at the opening of Parliament, announcing among other measures, the lifting of a 30-year ban on the ANC, the PAC and other anti-apartheid organisations, the suspension of the death sentence until further review, the release of some political prisoners and the partial lifting of restrictions on the media and on some detainees”.
1991 “European countries end sanctions against South Africa (April 15). The South African Parliament repeals apartheid laws (June 5)”.
1992 “Most European sanctions lifted; UN General Assembly ends restrictions on cultural, academic exchanges”.
“Whites support political reforms in referendum”.
1993 “Constitution of the Republic of South Africa ratified on December 22. Transitional Executive Council (TEC) established”
Nobel Peace prize is awarded jointly to F.W. De Klerk and Nelson Mandela.
1994 “27 April marked the first democratic elections in South Africa”.
Table 3: Highlights in South African political history between 1989 and 199431.
31 Information adapted from of http://www.sahistory.org.za/1900s/1980s
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Bearing in mind this political landscape, I had to cultivate a suitable response in interpreting the data to reflect each person’s experience closely remembering to apply it similarly to all cameo accounts which comprised the data collage. In processing the analyses, I needed to discriminate concerning information applicable to all informants from those components that were specific and limited to a particular informant. According to Ayres, Kavanaugh and Knafl (2003) “those aspects of an experience that were unique to one individual have limited
usefulness outside the interpretation of that individual’s experience” (p. 871). However these unique characteristics and nuances might be necessary when considering that person’s account of event. In the main, this Chapter will elucidate the informants’ content and context and draw parallels to my own experiences where it is applicable. The centrality of children to this study presented from the informant perspective is not veiled but is a different viewpoint. I am reliant on the parents understanding of the social and historical context and first-hand
experiences inserted as nodal moments in the study. I bring in other voices in my curiosity to know whether others experienced difficulties, new, same or different and to what extent to make commentary on the particular versus the general and universal. Contextual grounding of the meanings of human action and language which can provide particular commentary is vital to our everyday understanding of our own and others' behavior. In this study, the objective is also to locate meaning in context (Mishler, 1979).
My meeting with Patricia Krishna was an unforgettable nodal moment. Prior to meeting her, I have been avidly reading articles and publications related to inclusion, authored or co- authored by her. They include “Transforming professional development programmes into an inclusive education system” (2000). “In Meeting Special and Diverse Educational Needs.
Making Inclusive Education a Reality” (2000); and “The geographies of inclusion of students with disabilities in an ordinary school” (2011).
That one-on-one engagement with her facilitated and offered me further tools to penetrate into deeper issues of schooling and access, when she introduced me to the notion of
‘children’s geographies’. This critical discourse in that liminal space and time extended my thinking on inclusive education particularly with the concept of children’s geographies. I read
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further. I surmised that the notion of children’s geography would go beyond place and space and reading on the subject confirmed this.
In the absence of theorising earlier in the study, I was drawn to the ideas of Nind and Seale (2010) and children’s geography to frame my response by key informants in the study. I am motivated to apply children’s geography as an analytical frame for some of the data generated by all informants and conjoin this analysis with the theory of access as expounded by Nind and Seale (2010). Children’s geography offers the notion of spaces (and places) of the
children’s lives. The theory of access helps to review experiences of those spaces (and places) to question the how and the why of it and recast it to answer the research question: how did parents’ experience issue of access to schooling spaces for their children with Down
syndrome in the South African context, post- apartheid period.
I will now proceed to offer snapshots of the informants of this study, ranging from an accomplished international academic to domestic worker, with each presenting personal experiences related to disability and access of education for their children and loved ones.
Interspersed within the snapshots are actual, first person quotes from the key informants.
5.2.3 Snapshot of informants
Patricia Krishna’s involvement in dialogue and policy formulation was first read when I did a certificate course on Learning Impairments as a correspondence course through distance learning through the university in South Africa, Unisa. It whet my appetite on inclusive education and exposed me to ‘barriers to learning’ identification and intervention strategies.
Her academic writings were encountered more prominently during this and subsequent post graduate work on special needs.
Carol and I are both currently serving as board members on DSA-KZN. She has over the years, shared experiences of raising her daughter with DS and I often found I could identify with what she said. There is a two-year difference between Tiara and her daughter, Jennifer so it was possible to compare notes at times, on parenting matters. During the time she served as
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Chairperson of DSA-KZN, parents of CWDS benefited from her holding this portfolio as she had access to pertinent information particularly on health and social welfare and made it available to members.
Board meetings for DSA-KZN are held once a month and during the year there are several meetings for members of the DSA-KZN to hear talks from specialists on issues affecting CWDS and during these meetings I met Joy Nxumalo. She is a regular attendee and often brings her daughter, Lindiwe with her. We often get to talk about our experiences of raising CWDS and related social, medical, educational matters. She participates in group discussions and offers insights that help address access to CWDS in the township of Umlazi where she lives.
I met Estelle Adams during the World Down Syndrome Conference in 2012, when South Africa hosted it, in Cape Town. Opportunities to meet professionals, during the conference was possible during group sessions and intervals for tea and lunch. She showed me some pictures of her son, John, and I reciprocated with pictures of Tiara. We talked about our children’s common interest in music. Estelle is the outreach programme coordinator in Western Cape Province. We talked about the challenges parents face when choosing schooling options (if they have a choice) which her experience qualifies her to advise. We shared equal concern on hearing statistics of the number of CWDS who are unable to access basic services of education and disability grants, especially in the rural areas and planned to stay in touch. Fortunately, with technology, we stay in touch via e-mail.
These five people constitute the group of informants who exist in my world and were ever so willing to allow me to include their chronicles in conjunction with mine. The reader is reminded that the motif of the cross is used to introduce each informant. It underlines the ascent and remount of the slope of our past, with each person finding nascent action,
spiritually. Whether it is intended or incidental does not negate the need to cope, overcome or positively accept responsibility.
145 5.2.3.1 Patricia Krishna: The crossroad
Patricia Krishna recounted her life experience with a sibling. Her personal, intimate and moving narrative is a tribute to a remarkable young man who shared fifty-one beautiful years with her. Her account weaves nostalgic memories that thread her life’s journey as a sister and mentor to the embodiment of multiple roles of academic, activist, researcher, expert informer, advisor, keynote speaker and teacher. On a personal note, she shared the family’s journey on access to schooling for a sibling with cerebral palsy. “He was born with a cleft and during the surgery he suffered anoxia as a 10 month old baby. His major disability thereafter became deafness”. His hearing was affected profoundly by the brain injury he had during the surgery.
Apartheid laws of the time affected the search for appropriate schooling. Laws such as The
“Group Areas Act, Act No 41 of 1950” prevented non-whites from attending the same school as whites.The chief purpose of this Act to ensure compulsory separation in residential areas, was achieved. The Acts specified and restricted zones or spaces where various races were permitted to own property, live, study or work.32Because of his collaborative work between faculties, Professor B. Maharaj, a senior professor in the Department of Geography has
engaged in co-supervision of education based theses. His several publications entail the Group Areas Act and related work. In reading his account of “The group areas act and community destruction in South Africa” (1994), I learnt how the machinery of apartheid worked to oppress non-white people.
Group Areas Act was used to enforce ideology of apartheid. It served as a powerful tool for state intervention in controlling the use, occupation, and ownership of land and buildings on a racial basis. In terms of the Group Areas Act, separate residential areas, educational services, and other amenities had to be provided for the different race groups. The overriding goal was racial segregation (Maharaj, 1994).33
32 http://www.sahistory.org.za/politics-and-society/apartheid-legislation-1850s-1970s
33 Maharaj, B for further debates on group Areas Act. He is an expert in Group Areas Act discourse and analysis.
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Krishna recalled her stint at Spes Nova, a school including children diagnosed with CP, as the
“special need”. Her higher education (Honours degree) training as a psychologist pushed her to register for courses, like many others, in order to acquire skills to teach children with CP. It is at this school that she observed how effective a few teacher aides were in engaging the learners. The encouragement from the principal that teachers should receive in-service training meant that teachers were upgrading their skills to serve the needs of the learners.
On a broader trajectory and larger scale, Patricia Krishna was part of the dialogue on inclusion for the South African context. This engagement informed the drafting process with Education White Paper 6. While papers and publications attest to the strides she has made in personal and professional capacity to empower stakeholders at school, district and provincial levels to implement policy aligned to the country’s Constitution, she expressed that the goal of
inclusivity has yet to be realised on a national scale. “In our region children should be given a chance. Put them in Grade 1 and see what happens,” reflects the need to see inclusive
education succeed but she quickly adds that “but you got to get a teacher who’s trained in curriculum differentiation”. Her quest to see schools for special needs develop more
substantially than perceived “babysitting institutions” is printed on paper, but translating into practice will require “leadership; “accountability” and “raised expectations”. These issues on inclusion and barriers to access learning have been on the research agenda for a while as evident from these publications: Muthukrishna (2000); Muthukrishna & Schoeman (2000, 2005) Muthukrishna (2003 a, 2003 b); Muthukrishna & Ramsuran (2007).
5.2.3.2 Carol Williams: Criss- cross, living on both sides
Carol William’s opening statement “Jennifer is now 21 and was born with Down syndrome”
gave me my first glimpse of the pre-democracy period in which she was born - 1993. Jennifer is the second of two children with an age gap of thirteen years between them. Caroline
remarked: “I think she was 3½ - 4 weeks old when I decided that I had to get on with it because it was a new life for us and I had to find out about it”. Caroline mentioned that she contacted Down syndrome Association and gradually started to participate in all activities planned by the association. She did resign from her secure job in a bank with a 30 year service
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reward .When management of the association changed due to retirement, Caroline, being available, volunteered. Her entry was opportunistic and she needed to keep busy yet
accessible to the school personnel whilst Jennifer was there. Thirteen years of service to the association earned her the position of Branch Manager of Down Syndrome Association - Kwa-Zulu Natal (DSA- KZN).
Her determination and positive outlook to her daughter’s education opportunities, in the earlier year, is conveyed in her various statements: “From the time she was one day old I was rooting that she will be going to mainstream”; “I knew my plan. I knew Jennifer’s plan from the time she was born. I still know her plan”. “We now had a foot in the door”; “I was available”.
Caroline adopted a positive approach to motherhood and this in itself may be interpreted “as an act of resistance against linear medicalised models that tend to promote the notion that it is essentially tragic to be the parent of a disabled child” (Russel, 2003).
Jennifer had the experience of two different schooling systems. The one school offered her opportunity to be with her peers with whole school support where she earned two ‘A’ ratings one of which was for sums.
5.2.3.3 Joy Nxumalo: Crossing the road, carrying the cross
The third informant was Joy Nxumalo, a Black woman who lives in Umlazi, a township with an estimated population of 404,811 34 It is located on the east coast of KwaZulu-Natal, South Africa, and south-west of Durban. Joy has facility in expressing herself in English, for which she credited her White employers, although her home language is isiZulu. To Joy Nxumalo, who worked as a domestic servant until her retirement, the tragedy of losing two babies in her early twenties did not dim the passion she had to serve the needs of her daughter, Lindiwe. This was conveyed in the following sentiment: “I have only Lindiwe, only one child delivered
34 www.durban.gov.za/Documents/Invest_Durban/.../5.pdf
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through Caesarean section. I had two boys before her. They died. After those boys I got her.
Lorraine is 25 years old”. Joy was 37 years old when she had Lindiwe and is now 63. She explained that the first baby died during child- birth and to this day does not know the details of the incident. The second baby was stillborn at six months. When the nurse at the hospital told her that her third child Lindiwe was ‘not well’ she assumed this was only because she did not cry immediately when she was born. She later came to understand that the new-born unaccustomed to breathing on its own, was prompted through a gentle pat on its buttocks. It instinctively responds to the pain with a yell, which automatically opens the nose and the lungs to start conveying oxygen. When the matron who visited her at home said: “if you leave the child on the bed she’s going to sleep forever”, she assumed the child would die
imminently or some misfortune will befall the child. Both these statements would turn to be pivotal in her raising Lindiwe to ensure that the predicted gloom ‘to sleep forever’ did not happen. She referred to the manner in which the father of the child responded to the birth. He said: “I do not give birth to such children”. Such an impersonal statement reflects a broader cultural and gender stereotype that exists in society where blame for conception of disabled children is apportioned to mothers rather than fathers. Joyce felt a greater urge to protect her vulnerable child from the father who abandoned them despite having the resources to do differently: “He was a shop steward at work. He had the money to look after us but he did not want to”. Cultural factors influence and inform parents’ responses to their CWD and greater pressure is on fathers, in Black patriarchal society.
5.2.3.4 Estelle Adams: Cross it out, and get in
The fourth informant was Esther Adams, a Coloured female whose home language is
Afrikaans and who lives in Bellville, Cape Town. Esther Adams was the only parent who had the option of mainstream schooling from the age of eight (8) but chose to place him in a school for children with special needs. She accepted that “they (referring to the teachers) did not put pressure on these children and allowed them to learn at their own pace, for which I was satisfied”
Estelle’s fourth child, John, is 22 years old. John has Down syndrome. She refers to him as
‘laat lammetjie”, an informal term in the Afrikaans language which refers to a child born