The lived experiences of higher education for students with a visual impairment: A phenomenological study at two universities in the Western Cape, South Africa Heidi Lourens Dissertation presented for the degree of Doctor of Philosophy in the Department of Psychology at Stellenbosch University Promoter: Professor Leslie Swartz March 2015 Stellenbosch University https://scholar.sun.ac.za DECLARATION By submitting this dissertation electronically, I declare that the entirety of the work contained therein is my own, original work, that I am the sole author thereof (save to the extent explicitly otherwise stated), that reproduction and publication thereof by Stellenbosch University will not infringe any third party rights and that I have not previously in its entirety or in part submitted it for obtaining any qualification. Date: .................................. Copyright © 2015 Stellenbosch University All rights reserved ii Stellenbosch University https://scholar.sun.ac.za ABSTRACT Introduction: In the last two decades there has been an increase in the numbers of visually impaired students accessing universities in South Africa. However, very few studies have documented the experiences of these students. Through the lens of a phenomenological understanding of disability, this study thus aimed to capture the lived experiences of visual impairment, as recounted by participants from two universities in the Western Cape, South Africa. Methods: Data were collected and analysed according to the principles of the interpretative phenomenological approach. I conducted semi-structured, in-depth individual interviews with 23 participants, and 13 students participated in focus group sessions. Results: The analysis yielded important findings. First, participants described the challenges related to the transition from school, namely: orientating themselves to the new physical environment; making new friends; and deciding whether they wanted to disclose impairment. This transition was sometimes closely tied to introspection and a new sense of self. Mainstream versus special schooling experiences seemed to shape this transition and their experiences in higher education to a degree. Second, participants discussed complex social interactions with nondisabled peers, in which the latter reportedly offered help, and avoided or stared at participants, leaving them feeling “not seen”. In response, visually impaired students often denied impairment and concealed their emotional pain. Third, within the learning environment, the participants were sometimes confronted with unwilling lecturers, a lack of communication amongst important role-players, late course material and/or headaches and muscle tension from the effort of reading with limited sight. The students recounted that they commonly self-advocated and took the responsibility upon themselves to get special iii Stellenbosch University https://scholar.sun.ac.za accommodations. There were also many positive accounts of supportive lecturers and disability units who did more than was required of them. Discussion: Overall, these findings showed that the experiences of students did not seem to differ according to the institution they attended. Their visual category and/or secondary schooling seemed to have played a more significant role where their experiences differed. The findings also revealed that, in addition to the typical demands of university studies, the participants also took a lot of responsibility upon themselves to manage their studies and their physical and social environment. Participants seemed resilient and innovative, yet the effort sometimes drained their energy and left them frustrated. Despite valuable steps towards inclusion, these visually impaired students were still not fully included on tertiary campuses. Keywords: visual impairment, inclusion, higher education, South Africa, phenomenology, lived experiences, interpretative phenomenological approach iv Stellenbosch University https://scholar.sun.ac.za OPSOMMING Inleiding: Die aantal visiueel gestremde studente in Suid-Afrikaanse universiteite het oor die afgelope twee dekades toegeneem. Die ervarings van hierdie studente is egter deur baie min studies gedokumenteer. Die studie het dus gepoog om, deur middel van 'n fenomenologiese begrip van gestremdheid, die deurleefde ervarings van visiuele gestremdheid, soos vertel deur deelnemers van twee universiteite in die Wes-Kaap, Suid-Afrika, vas te lê. Metodes: Die insameling en analise van data is uitgevoer volgens die beginsels van die intertavistiess fenomenologiese benadering. Ek het semi-gestruktureerde, in-diepte, individuele onderhoude met 23 deelnemers gevoer en 13 studente het aan fokusgroep sessies deelgeneem. Resultate: Die analise het tot belangrike bevindinge aanleiding gegee. Die deelnemers het eerstens die oorgang vanaf skool en die verbandhoudende uitdagings beskryf, naamlik, om hulself te orienteer tot die nuwe fisiese omgewing, om nuwe vriendskappe te smee en om te besluit of hulle hul gestremdheid bekend wou maak. Hierdie oorgang het soms nou saamgehang met self-ondersoek en „n nuwe begrip van hulself. Dit blyk ook dat hoofstroom of spesiale onderwys tot „n mate die oorgang en algehele ervarings op universiteit gevorm het. Tweedens, het die deelnemers komplekse sosiale interaksie met nie-gestremde eweknieë bespreek. Volgens die deelnemers, word hul dikwels deur nie-gestremde studente aangestaar, vermy of gehelp, wat eersgenoemdd dikwels “onsigbaar” laat voel het. In reaksie hierop het die visiueel gestremde studente dikwels hul gestremdheid, asook hul emosionele pyn, ontken en verbloem. Derdens, was deelnemers soms gekonfronteer met onwillige dosente, kommunikasiegapings tussen kern rolspelers, laat kursusmateriaal en/of hoofpyne en spierspanning weens die inspanning van lees met beperkte visie. Die studente het vertel dat hulle oor die algemeen self-voorspraak doen en die verantwoordelikheid op hulself neem om v Stellenbosch University https://scholar.sun.ac.za spesiale aanpassings te verkry. Daar was ook heelwat positiewe kommentaar aangaande ondersteunende dosente en gestremdseenhede wat dikwels meer gedoen het as wat van hulle vereis was. Bespreking: In die algeheel gesien, blyk dit nie dat die ervarings van studente verskil na gelang van tersiêre instansie nie. Dit wil voorkom dat visuele kategorie en/of sekondêre onderrig „n groter rol in die verskille tussen studente gespeel het. Die bevindings dui ook daarop dat, afgesien van die tipiese vereistes van tersiëre studies, die deelnemers baie van die verantwoordelikheid moes dra om hul studies en die sosiale en fisiese omgewing te bestuur. Alhoewel deelnemers veerkragtig en innoverend blyk te wees, het die inspanning hulle dikwels gedreineer en gefrustreerd gelaat. Ten spyte van waardevolle vordering ten opsigte van insluiting, was hierdie visueel gestremde studente steeds nie ten volle ingesluit op tersiëre kampusse nie. Sleutelwoorde: visiuele gestremdheid, insluiting, hoer onderwys, Suid-Afrika, fenomenologie, leefervarings, interpretavistiese fenomenologiese benadering vi Stellenbosch University https://scholar.sun.ac.za STATEMENT REGARDING BURSARIES The financial assistance of the National Research Foundation (NRF), Cannon Collins Trust, Ginger Hilde Spiegel Trust and BlindSA towards this research is hereby acknowledged. Opinions expressed and conclusions arrived at are those of the author and are not necessarily to be attributed to the NRF, Cannon Collins Trust, Ginger Hilde Spiegel Trust and BlindSA. vii Stellenbosch University https://scholar.sun.ac.za ACKNOWLEDGEMENTS I want to thank the following people for their valuable contribution to this work: My husband, Hanro Lourens, for all the coffee, emotional support and for believing in me. Without you this work would not have been possible; My friends and family for the many ways in which you have enriched my life and provided support where I needed it. I am truly thankful that each one of you are a part of my lifeworld; Prof Leslie Swartz for your time, guidance, reassurance, expertise, support and faith in me. Thank you for making this potentially lonely process feel like teamwork; Prof Helene Loxton and Dr Charl Nortje for your valuable guidance at the beginning of this journey; All the participants of this research, for the trust you‟ve placed in me in telling your personal stories and for taking time out of your busy schedules. Greer Salt for editing my proposal; Jacqueline Gamble for editing this work. Having you in my team was such a very big comfort and relief! Dr Marieanna le Roux for your APA expertise; Lucinda Cloete, for finally making the library experience a pleasant one. viii Stellenbosch University https://scholar.sun.ac.za LIST OF ACRONYMS AHEAD - Association on Higher Education and Disability ANC - African National Congress APA - American Psychological Association CPUT – Cape Peninsula University of Technology DoE – Department of Education DoBE – Department of Basic Education DHET – Department of Higher Education and Training EWP3 - Education White Paper 3 on The Transformation of the Higher Education System EWP6 - Education White Paper 6 FOTIM - Foundation of Tertiary Institutions of the Northern Metropolis INDS - Integrated National Disability Strategy IPA – Interpretative Phenomenological Approach NCESS - National Committee on Education Support Services NCSNET - National Commission on Special Education Needs and Training NPHE - National Plan for Higher Education ODP - Office of the Deputy President SU – Stellenbosch University