Investigating the Integration in Austrian Schools, in particular in English Language Classes, of Students with Cerebral Palsy
Diplomarbeit
zur Erlangung des akademischen Grades
einer Magistra der Philosophie
an der Karl-Franzens-Universität Graz
vorgelegt von
Eva Fast
am Institut für Anglistik
Begutachterin: Priv.-Doz. BA. MA. Ph.D Sarah Mercer
Graz, 2016
ABSTRACT
A vast amount of literature exists on cerebral palsy and the best ways of treating it and teaching children affected by it. However, little has been written on how to best support these children on their way of learning a foreign language. Cerebral palsy is mostly accompanied by a mild to severe speech impairment, which can pose a significant barrier in communication and has thus led many people to believe that cerebral palsied people could never learn a foreign language. Furthermore, cerebral palsy causes a motor impairment that can further complicate these people’s participation in the language classroom. This study investigates cerebral palsied people’s ability to learn a foreign language in the context of a regular language classroom by looking at the experiences of seven former and current students affected by different kinds and degrees of the disability. Furthermore, their social integration among non-disabled students is investigated and factors encouraging, as well as factors detrimental to, an inclusive classroom atmosphere are studied. In order to cover all of these issues, the following research questions were addressed: What are the self-reported experiences of cerebral palsied students in Austrian mainstream schools in respect to general integration and language education in particular? What are the perceptions of the significant others in the lives of these students? It was found that all of the students were academically capable of following mainstream (language) education and mostly received the additional support they required to succeed in school. Their social integration among their peers seemed to depend largely on the age at which their non-disabled peers had first come into contact with disabled children.
Key words: cerebral palsy, mainstream and special education, English language teaching, learner needs, social integration
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ZUSAMMENFASSUNG
Umfangreiche Literatur existiert bereits über die infantile Zerebralparese und die erfolgreichsten Methoden, sie zu therapieren und Kinder, die von ihr betroffen sind, zu unterrichten. Wenig wurde bisher jedoch darüber geschrieben, wie man diese Kinder am besten auf ihrem Weg unterstützt, eine Fremdsprache zu erlernen. Die infantile Zerebralparese wird meist von einer diskreten bis schweren Sprechstörung begleitet, welche eine erhebliche Kommunikationsbarriere darstellen kann und somit viele Leute zu dem Glauben verleitet hat, zerebralparetische Menschen könnten niemals eine Fremdsprache erlernen. Des Weiteren bewirkt die Zerebralparese eine motorische Schädigung, welche die Mitarbeit dieser Menschen im Sprachunterricht zusätzlich verkomplizieren kann. Diese Studie untersucht die Fähigkeit zerebralparetischer Menschen, eine Fremdsprache im Kontext regulären Sprachunterrichts zu erlernen, indem sie auf die Erfahrungen von sieben ehemaligen und aktuellen SchülerInnen, welche von verschiedenen Arten und Graden dieser Behinderung betroffen sind, blickt. Des Weiteren wird deren soziale Integration zwischen nicht- behinderten SchülerInnen, wie auch förderliche und schädliche Faktoren, welche eine inklusive Klassenatmosphäre beeinflussen, untersucht. Um all diese Punkte zu bearbeiten, wurden die folgenden Forschungsfragen adressiert: Was sind die subjektiven Erfahrungen zerebralparetischer SchülerInnen in österreichischen Regelschulen in Hinsicht auf allgemeine Integration und Sprachunterricht im Besonderen? Was sind die Eindrücke der Angehörigen im Leben dieser SchülerInnen? Es wurde festgestellt, dass alle SchülerInnen geistig befähigt waren, dem regulären (Sprach-)Unterricht zu folgen und größtenteils die zusätzliche Unterstützung, welche sie zur erfolgreichen Absolvierung schulischer Pflichten benötigten, erhielten. Ihre soziale Integration unter ihren MitschülerInnen schien größtenteils davon abzuhängen, in welchem Alter ihre nicht-behinderten MitschülerInnen das erste Mal mit behinderten Kindern in Kontakt gekommen waren.
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ACKNOWLEDGEMENTS
First of all, I would like to thank my supervisor Sarah Mercer. Thank you for all your support and the hard work you put into everything you do. You have offered me constructive feedback and emotional support whenever I needed it. Your joyful and warm-hearted spirit has made working with you a pleasure through the ups and downs of this project, and I thank you sincerely for always remaining utterly kind and contagiously enthusiastic.
Secondly, my deepest gratitude goes out to all of the people that have made this study possible by contributing to it. It would not have been the same without each and every one of you and I thank you for your openness towards me and the trust you laid in me. You have allowed me a glimpse into your very personal thoughts and experiences and I hope to have made you proud with the product of our joint endeavour.
Special thanks go out to my best friends. I am grateful for having you in my life and knowing I can always count on you. You have helped me in many ways in the writing of this thesis, be it by offering practical support or simply making me laugh and forget about the stress of this project for a little while. I hope that we can grow old together as friends and keep laughing together for many years to come.
All of my love and gratitude go out to my parents, who have been nothing but supportive throughout my entire life. Papa, you have always supported me in every way you could and I will forever thank you for it. Mama, you have been my best friend, confidante, and therapist whenever I needed you and I cannot imagine where I would be today without your constant support and love for me. I have not always made it easy for you two, but rest assured that I am fully aware of how lucky I am to be calling you two my parents.
A very special thank you goes to my brother, who is the reason for this entire project. Koali, you know you will always be my number one man. You have taught me so much about what really counts in life. You filled my childhood with love and laughter, and still bring warmth to my heart every day. Your joy for life inspires me to be a more grateful human being.
Lastly, I have to thank my boyfriend and partner for life. Since meeting you, my entire life has changed and you have filled it with new meaning and joy. I would not have been able to write this thesis without your constant practical and emotional support. You complete me and make me a better and more balanced person, and I cannot thank you enough for it.
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DECLARATION
Ich versichere, dass ich die Diplomarbeit selbständig verfasst habe, andere als die angegebenen Quellen und Hilfsmittel nicht benutzt und mich auch sonst keiner unerlaubten Hilfe bedient habe.
Graz, am ______(Unterschrift der Studierenden)
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TABLE OF CONTENTS
1. CHAPTER 1: INTRODUCTION ...... 1
1.1. Introduction ...... 1
1.2. Thesis Overview ...... 2
2. CHAPTER 2: LITERATURE REVIEW ...... 4
2.1. Introduction ...... 4
2.2. What is Cerebral Palsy? ...... 4
2.2.1. What does the term cerebral palsy mean? ...... 4
2.2.2. What causes cerebral palsy and how can it be diagnosed? ...... 6
2.2.3. How does cerebral palsy manifest itself in an affected person? ...... 7
2.2.4. What can be done to improve the condition? ...... 8
2.2.4.1. What can be done medically? ...... 9
2.2.4.2. What can be done socially? ...... 14
2.2.5. What are the different types and degrees of cerebral palsy?...... 17
2.3. Cerebral Palsy and the Language Classroom ...... 21
2.3.1. Why should people with cerebral palsy be included in mainstream education? ...... 21
2.3.2. How is social behaviour affected by cerebral palsy? ...... 23
2.3.2.1. Challenging behaviour due to cerebral palsy ...... 24
2.3.3. How is intelligence affected by cerebral palsy?...... 25
2.3.4. How are language and speech affected by cerebral palsy? ...... 27
2.3.4.1. Language disorders due to cerebral palsy ...... 28
2.3.4.2. Speech disorders due to cerebral palsy ...... 31
2.3.4.3. What can be done to improve the speech of a cerebral palsied child? . 35
2.3.5. How should a teacher/assistant work with a child with cerebral palsy? ..... 38
2.3.5.1. The importance of classroom management ...... 38
2.3.5.2. The importance of a good student-teacher relationship ...... 39
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2.3.5.3. The importance of a relaxed atmosphere ...... 40
2.3.5.4. The benefits of music ...... 41
2.3.5.5. The importance of furthering oral output ...... 42
2.3.5.6. How to tackle writing ...... 43
2.4. Conclusion ...... 44
3. CHAPTER 3: RESEARCH METHODOLOGY ...... 46
3.1. Rationale and Purpose for the Research Study ...... 46
3.2. Methodological Design ...... 47
3.2.1. Qualitative case study ...... 47
3.2.2. Overall Research Design ...... 48
3.3. Research Context ...... 49
3.3.1. Participants and context ...... 49
3.3.2. Ethics ...... 52
3.3.2.1. The confidentiality of my participants’ personal information ...... 52
3.3.2.2. Disability Studies ...... 53
3.4. Methods of Data Collection ...... 54
3.4.1. Procedure ...... 54
3.4.2. Interview data ...... 56
3.4.3. Observation data ...... 58
3.5. Process of Data Analysis ...... 60
3.5.1. Digitalisation and transformation into written data ...... 60
3.5.2. Coding and analysis of data ...... 61
3.6. The Study’s Limitations ...... 63
3.6.1. Qualitative research...... 63
3.6.2. Interviews and observations ...... 63
3.6.3. Subjectivity ...... 64
3.7. Summary ...... 65
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4. CHAPTER 4: RESEARCH FINDINGS ...... 66
4.1. Introduction ...... 66
4.2. Aaron ...... 67
4.2.1. Background ...... 67
4.2.2. General education ...... 68
4.2.3. Relationship to peers ...... 68
4.2.4. Language education ...... 69
4.2.5. Life after school ...... 72
4.3. Ben ...... 73
4.3.1. Background ...... 73
4.3.2. General Education ...... 73
4.3.3. Relationship to peers ...... 74
4.3.4. Language Education ...... 74
4.3.4.1. Hauptschule ...... 75
4.3.4.2. Speech ...... 76
4.3.4.3. Waldorf school ...... 77
4.3.5. Life after school ...... 78
4.4. Chris ...... 80
4.4.1. Background ...... 80
4.4.2. General education ...... 81
4.4.3. Relationship to peers ...... 82
4.4.4. Language education ...... 83
4.4.4.1. Speech ...... 85
4.4.5. Life after school ...... 86
4.5. Dan ...... 88
4.5.1. Background ...... 88
4.5.2. General education ...... 89
4.5.3. Relationship to peers ...... 90 ~ VIII ~
4.5.4. Language education ...... 91
4.5.4.1. Speech ...... 94
4.5.5. Dan’s final year ...... 95
4.5.6. Life after school ...... 96
4.6. Evan ...... 97
4.6.1. Background ...... 97
4.6.2. General education ...... 98
4.6.3. Relationship to peers ...... 99
4.6.4. Language education ...... 102
4.6.4.1. Speech ...... 105
4.6.5. Graduation ...... 106
4.6.6. Life after school ...... 107
4.7. Fiona ...... 109
4.7.1. Background ...... 109
4.7.2. General education ...... 109
4.7.3. Relationship to peers ...... 110
4.7.4. Language education ...... 112
4.7.4.1. Speech ...... 116
4.8. Greg ...... 118
4.8.1. Background ...... 118
4.8.2. General education and relationship to peers ...... 119
4.8.3. Language education ...... 120
4.9. Conclusion ...... 122
5. CHAPTER 5: DISCUSSION OF FINDINGS ...... 123
5.1. Introduction ...... 123
5.2. My participants’ standpoints towards their own disabilities ...... 123
5.3. Integrating cerebral palsied people in mainstream education ...... 126
5.4. Integrating cerebral palsied people among their non-disabled peers ...... 130 ~ IX ~
5.5. My participants’ standpoints towards education ...... 133
5.6. My participants’ school experiences with language learning ...... 137
5.6.1. Classroom atmosphere and personal relationships ...... 137
5.6.2. Learner motivation and confidence...... 140
5.6.3. Concentration ...... 142
5.6.4. Music ...... 143
5.6.5. Technical aids and practical support ...... 144
5.6.6. The four language skills ...... 146
5.6.6.1. Listening ...... 146
5.6.6.2. Speaking ...... 147
5.6.6.3. Reading ...... 150
5.6.6.4. Writing ...... 151
5.7. Conclusion ...... 153
6. CHAPTER 6: CONCLUSION ...... 158
6.1. Main findings and practical implications ...... 158
6.1.1. Social integration ...... 158
6.1.2. General and language education ...... 159
6.2. Questions for further research ...... 162
BIBLIOGRAPHY ...... 164
LIST OF FIGURES ...... 177
LIST OF TABLES ...... 177
APPENDICES ...... 178
Appendix A: Extract from questions for structured student interviews ...... 178
Appendix B: Extracts from questions for semi-structured teacher interviews ...... 180
Appendix C: Extract from interview with Evan ...... 181
Appendix D: Extract from narrative from observation in Fiona’s English lesson ...... 182
Appendix E: Extracts from coding system ...... 183
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1. CHAPTER 1: INTRODUCTION
1.1. Introduction
What exactly is cerebral palsy and what does it entail? How should we treat people affected by it? What are we allowed to say or do and what can they do on their own? Are they also mentally disabled? Can they even follow regular education, let alone learn a foreign language, considering how much they seem to be struggling with their mother tongue already?
A lot is known nowadays about cerebral palsy as such and the motor issues it entails. Although the disability is still not curable, many forms of treatment exist and have brought about more or less satisfying results. Thus, a lot has been written about how to best treat and teach cerebral palsied children as a therapist, teacher, and parent. A lot is known about how these people’s physical impairments, such as speech disorders and diminished control over their extremities, can be treated, as well as what their intellectual strengths and weaknesses are and how they should be treated by their social environment in order to aid optimal physical and psychological development.
Although the social integration of disabled people is a very current topic and politicians, educationalists, and actionists insist on these people’s rights to be treated as equal members of society, a lot of ignorance still prevails on certain types of disabilities. While most people know that paraplegic people are not necessarily mentally disabled, not a lot seems to be known about cerebral palsy by the general public, particularly people who have never come into contact with others affected by the disability, and my personal experience has taught me that cerebral palsied people are easily and often underestimated by strangers.
Having grown up with a younger brother with severe cerebral palsy, who – thanks to the unwavering commitment of our father – was lucky enough to thrive in the environment of mainstream schools for all of his educational life, I am passionate about the topic of how disabled children can be integrated in regular schools if they possess the necessary intellectual abilities for it. I have seen firsthand the difference it can make to the child and everyone involved with them. However, I have not gotten to know the ins and outs of my brother’s wonderful school experience and am not blind to the fact that such attempts at integrating disabled children are not always entirely successful.
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Finding that little to nothing has yet been written on the factors that render the integration of a child with a speech and general motor impediment such as cerebral palsy in the L2 classroom a success, was disappointing to me, but more importantly a huge source of motivation to try and fill a gap in the market and make a tiny contribution to modern disability studies by studying mainstream language education with a handful of people affected by different kinds of cerebral palsy and in doing so hopefully gain a better understanding of their needs and perspectives in respect to general and language education.
In consulting former and current cerebral palsied students of mainstream schools, as well as their parents, teachers, and assistants, this thesis aims to provide a holistic view on what exactly cerebral palsy is, what the current state of integration in Austria looks like, and how this disability and integration can best be put together for a successful and satisfying outcome for all parties involved, while always keeping the focus on language education. None of my recommendations and conclusions can be thought of as fixed and infallible instructions to help solve the general issue of integration in all cases. Indeed, I am very aware of the fact that integration has its limitations and that it is by no means always successful or even possible.
My interest, however, lies on clarifying the need to integrate intellectually qualified children and offering possible guidelines on how to do it by studying existing literature on the topic, and presenting a failed example of integration in addition to the success stories of several cases who have, despite their obvious burdens, found a way of making integration and language learning work to a satisfying degree. In studying what theorists have said about how the inclusion of disabled people, cerebral palsied individuals in particular, into mainstream schools can work and asking cerebral palsied people and their educators themselves how it worked in their instances, I seek to put forward a possible course of action and show why such integration might be worth fighting for, considering its possible benefits for all concerned, whether it be the disabled students themselves, as well as their parents, peers, or teachers.
1.2. Thesis Overview
In order to get a more informed understanding of what exactly cerebral palsy is and how it may affect a person’s ability to control their entire body and speech apparatus, professional current, as well as older, literature was consulted and its knowledge will be presented in chapter 2. After providing a general overview of the disability, its causes and various effects, possible forms of treatment will be presented, which cover both the medical and the social ~ 2 ~ perspective. After shortly introducing the various types of cerebral palsy, the rest of chapter 2 will then be dedicated to all things relevant when integrating a child with cerebral palsy in regular language education. Reasons for such an endeavour will be presented, before I will elaborate on how the disability can affect a person’s behaviour, intelligence, language, and speech and how the latter can be improved. Finally, I will look at what teachers and assistants can do to best support their cerebral palsied student’s language education.
Chapter 3 will then focus on the methodological implications underlying this study. After explaining its rationale and purpose, and presenting its guiding research questions, the reasons for choosing to do a qualitative case study will be explained and the overall research design will be illustrated step by step. Furthermore, the study’s context will be addressed, introducing its participants and attending to the ethical issues underlying it. After presenting the methods that were used in the process of data collection and why they were deemed most appropriate for this present study, the process of the accumulated data’s analysis will be presented in detail and again the reasons for choosing to work the way it was done for this study will be explained. Finally, the study’s limitations and shortcomings will be discussed.
Chapter 4 will present all of the research findings I deemed relevant to this study. Each participant will be presented separately, and their experiences with general schooling and being integrated among non-disabled children, as well as language education and speech therapy in particular, will be presented. In a final step, I will look at what the former students’ lives have looked like after finishing school and how their former language education might have influenced the lives they are now leading.
Chapter 5 will then bring all of my findings together and discuss them. The similarities and differences between my cases will be discussed in detail. In this chapter especially, my own standpoint towards this study’s topic will emerge occasionally, but will always be apparent as my own viewpoint. Furthermore, the consultation of existing literature in the course of discussing my findings shall give this chapter’s claims and inferences more credibility and professional support. Chapter 6 will present my final conclusions on this study’s outcomes, as well as discuss pedagogical implications, and form questions for further research.
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2. CHAPTER 2: LITERATURE REVIEW
2.1. Introduction
This chapter will give a broader insight into what exactly cerebral palsy is and what the implications are for a person affected by it. I will explain how doctors detect cerebral palsy in a child and how it can manifest itself in a person. Furthermore, I will give insight into possible forms of medical treatment, as well as offer literature-based advice on how fellow human beings, such as parents, teachers, and peers, should treat a cerebral palsied child in order to allow for them to prosper in their environment.
The second part of this chapter will explain why cerebral palsied children should be allowed to attend regular schools and offer possible ways of integrating and supporting them in their academic life and language education in particular. After explaining to what extent cerebral palsy can affect areas relevant to language learning, such as intelligence, and language and speech development, I will offer concrete advice on how to best include cerebral palsied students in regular language education, so that both disabled and non-disabled students can best profit from the experience.
Although the seven main participants of my empirical study (i.e., Aaron, Ben, Chris, Dan, Evan, Fiona, and Greg) will not be properly introduced until chapter 4 of this thesis, I will occasionally mention them in this chapter, in order to give more depth to my theoretical findings and add a tangible element to them.
2.2. What is Cerebral Palsy?
2.2.1. What does the term cerebral palsy mean?
While the term palsy1 is fairly easy to understand, denoting some degree of muscular paralysis in the human body, the term cerebral is in need of an explanation. It derives from cerebrum, the Latin word for the brain. However, in medical language it is also used to refer to the biggest part of the five brain sections, namely the telencephalon, located at the very top of our brain and making up 80% of its entire mass. It is the most advanced area of the brain and responsible for more complex functions. (Bakshi, Dhruv & Chiang, Grace, n.d.; Ferrari, Lodesani, & Muzzini, 1998; Reuter, 2001; Roper, 1981)
1 Throughout this thesis, I have written certain words in italics that are either foreign words, specialist terms used for the first time in the text, or emphasised words. ~ 4 ~
Figure 1: The human brain (Bakshi, Dhruv & Chiang, Grace, n.d., fig. 1)
As can be seen in the above illustration, the telencephalon contains the cerebral cortex, which further contains the so-called white substance, which can play a crucial role in cerebral palsy, as will be explained later. First, it is important to note that brain damage leading to cerebral palsy does not only occur in the telencephalon. Areas such as the cerebellum, located in the metencephalon, and the brain stem, composed of the mesencephalon (also called midbrain), the pons and the medulla (also called myencephalon), can be affected as well. (Alekseyeva, Anastasia, 2015; Ferrari et al., 1998) It is therefore better to regard the term with its original meaning, denoting the entire brain.
While in German we often speak of infantile Zerebralparese, adding the word infantil to point out that the damage to the brain was done before, during or shortly after birth, the English language usually only uses the term cerebral palsy, while also referring to cases affected by it by birth. (Brown, 1967) This is insofar relevant, as it clarifies that I am exclusively working with cases who have been disabled their entire lives. This means that psychologically they have somewhat of an advantage towards formerly non-disabled people who have become disabled later in life. While a person who has always been disabled has never acquired certain abilities, a person who did not use to be disabled has lost many abilities and needs to cope with this tragic change and adjustment. (Ferrari et al., 1998)
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2.2.2. What causes cerebral palsy and how can it be diagnosed?
When first diagnosing a newborn child’s behavioural patterns, a doctor is faced with the task of distinguishing between benign, harmless deviations from the norm and pathological abnormalities, namely, movement patterns that do not occur with a non-disabled child. While the first merely require regular inspections, the latter must be responded to with the immediate initiation of their treatment in order for it to be as fruitful as possible. (Haidvogl & Tauffkirchen, 1983; Neuhäuser, 1982) 2 to 2.5 out of 1,000 children born alive will be affected by cerebral palsy. (Gehrke, 2016) Boys more so than girls make up around 55 to 66% of the affected cases. (Neuhäuser, 1999)
Although much progress has been made in treating cerebral dysfunctions over the last years (see section 2.2.4.1.), a cause analysis is still difficult. While genetic factors only play a minor role, various external factors can contribute to cerebral damage and are categorized as pre-, peri- and postnatal possibilities of damage. Better obstetrics have minimised pure cerebral palsies and reduced some forms of the disability over the last decades, leading to a comparative rise in severe multiple disabilities and making prenatal factors the number one cause of cerebral palsy. (Neuhäuser, 1999; Rogers, 2011; Schwarz, 2007)
50 to 60 % of all injuries or damage leading to cerebral palsy will happen before birth. These include infections (such as rubella), metabolic diseases of the mother (such as diabetes mellitus), or blood group incompatibility (hemolytic disease of the newborn). (Neuhäuser, 1999) 30 to 40 % of all incidents will happen during childbirth, especially in cases of premature birth, where vital organs, such as the lungs, are not fully developed yet. This can lead to an oxygen deficiency for the infant, which can further cause periventricular leukomalacia (i.e., damage of the white matter in the brain [“Periventricular leukomalacia,” 2016]). Other causes of this phenomenon may be cerebral edema (i.e., excessive fluid in the brain [Reuter, 2001]), reduced arterial circulation, hypoglycemia (i.e., low blood sugar [Reuter, 2001]), a local increase of lactic acid, as well as a decrease of blood pressure. (Feldkamp & Matthiaß, 1988; Neuhäuser, 1999) In less than 10% of the cases, cerebral palsy is caused by postnatal factors, which include infections (such as meningoencephalitis), vascular dysfunctions (such as thrombosis), or trauma. (Feldkamp & Matthiaß, 1988; Neuhäuser, 1999)
By the time the child is about a year old, the symptoms of their particular disability will be explicit enough for doctors to make a concrete diagnosis. (Neuhäuser, 2006) This can be done ~ 6 ~ via aetiology (i.e., the study of the cause for an illness’ formation [“Etiology,” 2015]) or pathogenesis (i.e., the study of an illness’ formation and development and all of the factors involved in it [“Pathogenese,” 2015]). (Ferrari et al., 1998) However, a precise local diagnosis is very rare, as most cases show a combination of the differentiated syndromes of cerebral palsy, which will be illustrated in the following section. (Neuhäuser, 1999)
2.2.3. How does cerebral palsy manifest itself in an affected person?
Movement disorders due to cerebral palsy result from primitive reflex mechanisms not being inhibited and thus impeding the child’s motoric progress. (Schwarz, 2007) While in the non- disabled child possible variations from the norm usually dissolve with time, abnormalities found with the cerebral palsied child increase with time, especially if not treated. (“Cerebral Palsy Characteristics,” n.d.; Haidvogl & Tauffkirchen, 1983)
People with cerebral palsy display an anomalous posture of head, torso and extremities in every position. (Haidvogl & Tauffkirchen, 1983) Possible aspects of cerebral dyskinesia include various forms of athetoses (i.e., slow, involuntary movements of extremities and in some cases neck and tongue [“Athetosis,” 2016]), tremor (i.e., involuntary muscle contraction and relaxation leading to twitching movements [“Tremor,” 2015]) dystonia (i.e., athetoses originating in the brain’s motor centres, often leading to spasm, cramps and abnormal posture [“Dystonie,” 2015]) and rigidity (occurring when the cerebral palsied person has hypertonia, i.e., a higher than normal muscle tone [Roper, 1981]). All of the above lead to movement disorders as a result of involuntary physical motions and shifts in muscle tone. (Feldkamp & Matthiaß, 1988)
Too high a muscle tone as such can lead to cramps, but even more so said shifts between hypertonia and hypotonia (i.e., a lower than normal muscle tone [Roper, 1981]) especially encourage cramping seizures, which about 20 to 50% of all children with cerebral palsy experience – especially in the first years of their lives – and which can even lead to epilepsy if they occur on a regular basis. (Hahne, 2006; Neuhäuser, 1999; “Seizures,” n.d.) In certain cases that cannot be treated medically, hemispherectomy (meaning the surgical removal of one of the cerebellar hemispheres [Reuter, 2001]) has proven to be helpful in either reducing or even completely extinguishing epileptic seizures and furthermore reducing spasticity. (Krenkel & Bröcheler, 1982)
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However, not every individual with cerebral palsy is affected by athetosis. While hypertonic cerebral palsy is the most common form of the disability, less than half of all people with cerebral palsy are affected by hypotonia. (“Hypertonic and Hypotonic Cerebral Palsy,” 2016) Children may also go from a stage of hypotonia to being hypertonic. (Abdel-Hamid, Hoda Z, 2015; Neuhäuser, 2006) More on the various types of cerebral palsy can be read in section 2.2.5.
Having asked my participants (of which 4 have got hypertonia, while another one has got athetosis) whether they have ever experienced epileptic seizures during their school career and being intrigued about how they might have dealt with and felt about them, as well as how their teachers, assistants, and peers might have reacted to them, I was pleasantly surprised to hear that, although some of them did have seizures while they were very young, none of my participants had any kind of seizures during their school career, wherefore I was not able to further examine how they might have affected their intelligence or concentration level.
2.2.4. What can be done to improve the condition?
A lot can be done to try and prevent cerebral palsy in an infant. For example, if parents are aware of certain risk factors, such as having an ART (assisted reproductive technology) during a prevailing chronic infection or sexually transmitted disease of the new mother. Other, postnatal risk factors would be if the child was abused, maltreated, or acquired an infection that would decrease their blood flow to the brain. (“Prevention,” n.d.)
However, cerebral palsy is still not curable; although there is hope that stem cell research might one day provide us with the long awaited cure for this disability. (“Cure,” n.d.; Gehrke, 2016) It is therefore a permanent, yet not unchangeable condition. While the damage once done to the brain is not progressive, its repercussions are not stable factors. (Feldkamp & Matthiaß, 1988; Ferrari et al., 1998) Cerebral palsy can improve and deteriorate throughout an affected person’s life, depending on the treatment they receive. The correct treatment involves the right kind of medical, as well as social, help. People with cerebral palsy must be enabled, by their immediate environment, as well as society in general, to achieve as much as they possibly can and go beyond expectations rather than accept what doctors or a pre-defined disability has laid out for them. (Ferrari et al., 1998) I will question my participants on how encouraged they have felt to achieve whatever they aspired to during their school career.
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2.2.4.1. What can be done medically?
As was mentioned in the previous section, without adequate and regular therapy, symptoms of cerebral palsy can worsen dramatically with age. It is therefore imperative for the child’s wellbeing that they receive immediate and regular treatment. (“Cerebral Palsy Characteristics,” n.d.) At first, doctors must clarify the correlation between the irreparable organic damage and the prevalent paralysis. The latter is what can and must be treated permanently. (Ferrari et al., 1998) The primary goal of such therapy is to normalise movement patterns as much as possible and achieve motoric independence. This means neither that the person will be independent from constant human help, nor from aids such as a wheelchair or a walking frame. What is meant by motoric independence is the achievement of a maximum of functional performance and motion patterns that are as close to the recognised healthy norm as possible. (Milani-Comparetti, 1974)
The disabled person’s immediate environment (i.e., their family, friends and colleagues) play a crucial role in the success of this therapy, as they should try to treat the person in a therapeutic way. (Milani-Comparetti, 1974) What this means specifically is that they do not help where help is not really needed and where it would only keep the disabled person from training a certain motor skill and might thus actually demotivate rather than support them. I know from personal experience that not helping in certain areas (for example, eating, drinking, or turning on the TV) is a very hard thing to do, yet I have seen the motivation boost my brother has gotten from being left alone with certain things and realising that he can in fact do them on his own. British comedienne Francesca Martinez writes in her book about the pride and relief she and her family felt when she got her driving license, even though she knew she would not be driving anywhere on her own. What counted for her was that she knew she could do it. (2014) I will investigate how much help my participants have received from their significant others during their school time and whether they were content with it or would have wished for more or less assistance.
More concrete primary goals of any therapy are the disabled person’s independence in the areas of food intake and body hygiene, as well as their cultivability and learning capability. At the core of every cerebral palsied person’s non-surgical and non-medicated therapy is always their gymnastic and orthopaedic treatment. Furthermore, curative teachers, social workers, and psychotherapists might be consulted. (Krenkel & Bröcheler, 1982) The first might accompany the child during their school routine; help them keep up, motivate them and
~ 9 ~ explain certain things again. Seeing as Aaron, Ben, Chris, Dan, Evan, and Greg were accompanied throughout all or most of their school years by an assistant, while Fiona is currently being assisted by a curative teacher, it will be interesting to examine possible differences and find out how curative teachers might approach the assistance of a disabled child differently to an assistant who is “simply” a social worker (meaning that they do not have the in-depth training of a curative teacher).
Psychotherapy might also be an option if the child has problems accepting their disability and the differences between them and the rest of their peers. Martinez, for example, writes about how hard it was for her to accept her disability and that she always fought treatment, pretending that she did not need it. (2014) In this area, a psychotherapist might help a disabled child come to terms with their differences and disadvantages and embrace the positive things in their life, and motivate them to tackle the obstacles cerebral palsy imposes on them rather than trying to ignore them.
There is, however, also a range of practical forms of therapy. Different types may address four different kinds of functioning levels. These are the mechanical one (which consists of the muscles, bones, joints, and such), the central nervous system (the machine that directs our body; an inherent part of it and thus our hardware of sorts), the level of motion programming and development (the different kinds of movements and motion sequences a person can execute; the variable components of our body and thus our software of sorts), and the level of motivation and movement initiative. In order to tackle the mechanical level, segmental physiotherapy and orthopaedic measures are most successful, while the central nervous system can only be treated surgically or chemically, for example, via neurotomy (i.e., the “surgical cutting of a nerve” [Roper, 1981, p. 207]). Impaired motion programming is again best treated with physiotherapy, while music, games, and occupational therapy have proven successful in promoting motivation and personal initiative. (Milani-Comparetti, 1974; “Was ist der Unterschied zwischen Hard- und Software?,” 2007)
I will investigate the amount of physiotherapy my participants have had over the course of their school career and ask them, as well as their significant others, whether they have felt or seen improvements with a specific kind of therapy which may have helped them in their everyday school routine. For example, some of them may have learnt to make better use of their arms and may thus have learnt to write on their own without the need of an assistant recording everything for them. Furthermore, I will examine the amount of music and games
~ 10 ~ that were used in the lessons and ask my main participants, whether they enjoyed musical and playful elements. I will also ask the teachers in whose lessons music and games played important roles, whether including these elements were conscious decisions made because of the disabled students in their classrooms and whether they were happy with these strategies’ outcomes.
After all, it is, however, important to understand and remember that therapy can never trigger monumental change and improvements are always small, gradual and eventually limited by a fixed frame, imposed upon the disabled child by the irreparable damage that was done to their brain. (Krenkel & Bröcheler, 1982) My brother has been going to a physiotherapist every week for most of his life. For a while, he also did horseback riding, swimming, cycling and many things more. My family and I know that we have to thank these constant therapies for him not being worse than he is, but in truth none of those therapies has made my brother’s condition significantly better. They have helped him keep up his current state and prevented it from getting worse. More importantly, however, they have helped him cope with his disability and acquire techniques of doing as many little things as possible on his own and in his own special way. That is what therapy, as well as education, primarily aims to do. It helps the disabled individual to find the optimal way to cope with their condition and manage life as successfully as possible under the complicating circumstances of their disability. (Bläsig, 1982)
Eine Behandlung kann die vorhandenen Symptome weder auslöschen noch verstecken oder verschleiern [...]. Sie kann auch nicht den sog. Entwicklungsrückstand aufholen; vielmehr muss sie imstande sein, den Menschen mit seinen Mängeln und Fähigkeiten in seinem jeweiligen sozialen Umfeld zu integrieren. (Ferrari et al., 1998, p. 17)
Treatment can neither eliminate, nor hide or disguise the existing symptoms. Neither can it regain the so called underdevelopment; in point of fact it has to be able to integrate the person with their deficiencies and abilities in their respective social environment.
It is vital for people with cerebral palsy to not only strive for the improvement of their condition but to try and learn how to best live with it and master it. A severely tetraplegic person will never learn how to walk independently, but as my brother, as well as my participants Aaron, Ben, Dan and Evan, who are all severely tetraplegic, have proven, they can learn how to use a wheelchair in order to move along. (Feldkamp & Matthiaß, 1988) It was not least because of a lot of physiotherapy that my brother was able to use his right hand effectively enough to be able to type with a keyboard and thus write school homework on his own. Physiotherapy also helped him move along very slowly in his wheelchair on his own ~ 11 ~ and thus be able to play along with his friends during breaks without someone always needing to move him every inch or his assistant needing to be present at all times.
I know from personal experience the improvements that can be achieved, yet, I also know that they are sometimes hard to notice for people who do not know anything about cerebral palsy and thus lack a keen eye for the small changes that can mean the world to an affected person and their family. Just this summer, my mother and I took my brother to Barcelona, where an infamous doctor performed a not so new but very complex and often failed procedure of cutting shortened muscle fibres, so called fasciae2, throughout my brother’s entire body. (For more on the process of such an operation see further down this section, as well as Döderlein, 2015, and Nazarov, 2013) To some visitors in our house the changes are hardly visible; yet, our life as a family at home and my brother’s work life have changed dramatically because of them. With the sectioning of the shortened muscle fibres that were limiting his healthy muscle tissue’s movement, he is now less stiff all around. He can effectively use his left hand for the first time in his life, his eyes are much more open and relaxed, he has regular bowel movement, and he is able to walk very slowly and very little with the help of a walking aid and another person holding him for security. (Nazarov, 2013)
As my brother himself is no longer in school, his operation made no difference to his school life. It did, however, trigger significant improvements in his work life that would have been relevant to his school performance as well. He can now write emails quicker and makes fewer mistakes. Furthermore, the decrease in muscle stiffness means that he is less exhausted when he comes home from work. As I was lucky enough to find a former student, who had the same operation in the summer before his last school year and a further current student, who underwent the procedure only very recently, it will be interesting to discover the effects the (hopefully) right medical procedure can have on the academic success of a school child.
The operation my brother has had does not stem from a groundbreaking new discovery. (Krenkel & Bröcheler, 1982) For approximately 200 years, doctors have been operating on spastic people’s muscles and tendons in an attempt not only to reduce their spasticity but also to make their joints more flexible and sitting, standing, walking and grabbing easier. Europe has, however, recently seen significant changes in the preferred modus operandi. While such operations were traditionally performed openly (meaning that the surgeon would cut the
2 Fascia is “a connective tissue sheath consisting of fibrous tissue and fat which unites the skin to the underlying tissues. It also surrounds and separates many of the muscles, and, in some cases, holds them together”. (Roper, 1981, p. 117) ~ 12 ~ patient’s skin, thereby rendering the muscle visible, and then cut muscle fibre with a knife), doctors are now mainly operating percutaneously (meaning that they reach the muscle fibre via stab incision and palpation and then cut it with a blunt tenotome). (Strobl & Krebs, 2013)
the pathological fibre
Figure 2: The pathological muscle fibre (Wording corrected. Figure from: Nazarov, 2013, fig. 1)
The pathological fibre, which can be seen in the centre of the above illustration, is then cut so that the healthy muscle tissue may develop and grow more freely again. This specific operation is called myotenofasciotomy. (Nazarov, 2013) Reports on the success of this procedure are positive, accounting reduced spasticity, as well as improved movement functions, in more than 50% of the cases. However, much discussion and examination has yet to be done on the complex intervention of the selective percutaneous myotenofasciotomy. (Strobl & Krebs, 2013) Döderlein also shows that severe mistakes have been made in the execution of the procedure over time. (2015)
Unfortunately, however, the Russian doctor, who has been successfully practicing it since 1992, still does not train his fellow doctors in his operational technique, write a book, or hold speeches about what exactly it is that he is doing so well. (Nazarov, 2013) Maybe he cannot put it into words. Maybe he does it intuitively. All I know is that after seeing the many futile operations my brother’s friends (who are among my participants) have had (and even my brother has had a minor but fruitless operation many years ago, where Botox was injected into his upper inner thighs’ adductors3) this is the first operation where my family, myself, and our friends have personally witnessed significant, life-changing even, improvement.
3 An adductor is “[a]ny muscle which moves a part toward the median axis of the body”. (Roper, 1981, p. 6) ~ 13 ~
2.2.4.2. What can be done socially?
School plays a fundamental role in shaping a young person’s character and personality. (Kumar, n.d.; Textor, 1991) Integrating a cerebral palsied child in a mainstream school and in doing so letting them be part of the normal school routine and education that most other children are allowed to partake in and experience can be highly beneficial to the disabled child’s intellectual and social development, as it shows them that they have in fact got what it takes to take part in society with all its non-disabled people. (Neuhäuser, 2006) It shows the child that they belong with everybody else and not only within a smaller, so-called special group of people. However, not only the disabled student will learn this lesson. Non-disabled children also learn through integration that disabled people belong amongst them as their equals. Thus, integration feeds the main purpose school education serves, which is not primarily to provide children with just knowledge, but to build their characters, moral values, and attitudes, as well as intellectual, emotional, and social competences. (Textor, 1991)
While mere decades ago very few children with cerebral palsy could be found in regular schools, amongst other reasons also because teachers were not familiar enough with working with a disabled student, full integration is a slow but stable rising trend in the Austrian school system, with Styria being a pioneer and as of 2014 supposedly already including approximately 85% of disabled students in regular schools. A report from the University of Innsbruck has even claimed that special education schools were violating public international law. (Bläsig, 1982; Mittelstaedt, 2014) 2015 has seen big changes in teacher education too, as there is no longer a separate professional training for special education teachers. All kinds of teachers are now provided with knowledge in special education, if they wish to work with disabled students. (Schorn, 2014) By 2020, it is said that special education schools will be an exception in Austria, with most disabled students attending regular schools and being assigned an assistant (which most of my participants, as well as my brother, have already had the chance to experience) or being categorised in integration classes (which Fiona is currently experiencing). (Mittelstaedt, 2014; Schorn, 2014) I will investigate my participants’ perceptions of and attitudes towards integration in regular schools in their own cases.
Looking at most experts’ opinions, the answer to whether disabled children should attend regular schools seems clear. In order for them to grow and fulfil their full potential, they must be given the chances and adequate help to do so by profiting from their immediate social environment and society in general. Despite the damage done to the brain being irreversible,
~ 14 ~ epigenesis teaches us that the nervous system’s operating sequences are only being realised and consolidated via the child’s interaction with their environment. (Ferrari et al., 1998) Potentially available skills and competences get lost if they are never given the chance to emerge and be exerted. The willingness to ‘succumb’ to one’s disability and accept certain limitations without even trying or without trying hard enough to overcome them may increase with age, especially if the child is never encouraged to push themselves to achieve more and improve. (Brown, 1967; Ferrari et al., 1998)
Die Hirnschädigung selbst verändert sich nicht, aber die Anforderungen der Umwelt an das Nervensystem werden immer komplexer, was zu einer Zunahme der Behinderung [...] führt. Diese ist einerseits vom Primärschaden abhängig, andererseits aber auch von den im Laufe der Entwicklung angehäuften Folgeschäden, die sich aufgrund fehlender Erfahrungsmöglichkeiten und mangelnder Aneignung neuer Fähigkeiten ausbilden. (Ferrari et al., 1998, p. 15)
The brain damage itself does not change, but the environment’s requirements towards the nervous system are becoming more and more complex, leading to an increase of the disability, which is on the one hand dependent upon the primary damage, yet on the other hand also upon the consequential damage accumulated in the process of development. This damage forms as a result of a lack of possibilities for experience, as well as insufficient appropriation of new abilities.
It can be a devastating experience when the formerly hopeful and naïve child begins to realise what they will never be able to do. My brother, for example, always wanted to become a professional football player. Although he was aware of his disability, he simply had not considered it as a potential obstacle in his career choice. While my brother, fortunately, did not have a breakdown over realising his athletic dreams would never become reality, I know cerebral palsied people and their families who do suffer under the inescapable limitations the condition poses. Especially in these cases, it is vital for the disabled person, as well as their significant others, not to give up hope on progress. If disabled people do not realise the potential they have, the primary damage done to their body is amplified by a secondary damage, resulting from the failure to acquire certain motor, cognitive, communicative and relationship skills. This further leads to a tertiary damage or pathology of the locomotor system, which is insufficiently used and unstable, exhibits malpositions and other limitations not necessarily directly posed by the person’s cerebral palsy. Ferrari, Lodesani, and Muzzini speak of a developmental disability, when the disabled person does not exploit their full potential out of a certain resignation that might settle with increasing age. (1998) The reasons for such a resignation or lack of motivation to evolve can be diverse. Maestro calls attention on the importance of parents and therapists in the child’s stance towards their disability and their own body. (1998) ~ 15 ~
The previous section already mentioned the therapeutic way, in which parents can and should treat their disabled child, meaning that they should help them but not hinder the development of their independence. This is by no means an easy task and may require professional help and counselling. When two people are expecting a child, they imagine what their offspring will be like one day and hope for the best. They might hope that their child will look beautiful or handsome and be popular with their peers. They might hope that they will be good at school and have a successful career. They might also hope that they will be athletic and particularly good at some kind of sport. What they will most likely hope is for their future child to be healthy. Knowing that, strictly speaking, according to the recognised norm, one’s child is not healthy and cannot and will never be able to do many things other people can easily do is a harsh reality to come to terms with for a parent. It is also a hard lesson to learn for the affected child (as we have already learned from Martinez, who was in denial of her disability for most of her childhood [2014]). (Maestro, 1998)
However, as was already mentioned, how the disabled child views themselves can be greatly influenced by their parents and how they view their child and the child’s disability. Do they only see the damaged areas; the ones that need treating and caring? Or do they see the child as a whole, with dreams and wishes, hobbies and strengths, just like those of any other overall healthy child? The relationship between the parents and their child with cerebral palsy can be very complex. After the child realises that their body does not respond to their orders like other people’s bodies do, they can develop a form of hatred towards the malfunctioning frame they are trapped in. When other babies learn to make their first steps, those are also their first steps towards a life independent from their parents. A child with severe cerebral palsy is denied the experience of this first feeling of freedom and self-reliance. If their environment (i.e., their parents, therapists, teachers, and such) further assist this feeling of emotional and physical dependence, it can severely hinder the child’s development, personal growth and connection with the outside world. (Maestro, 1998)
Bedürfnisse nach Selbsttätigkeit jedoch, die vom Kind selbst kommen, werden sehr oft eingeschränkt oder gar nicht zugelassen, weil sie vom Kind unbeholfen, ungeschickt, unvollkommen realisiert werden. (Kunert, 1982, p. 456)
However, needs for self-action, which originate from the child themselves, are often constrained or not allowed at all, because the child realises them in an inept, clumsy, incomplete manner.
It is a fine line parents have to walk in providing the child they love with everything they need but not underestimating and undermining them. Despite needing their parents more so than ~ 16 ~ non-disabled children, disabled children must learn to separate themselves from them in order to grow as separate individuals. In this case, therapy does not aim to, for example, teach a non-walking child to walk like other children. It aims to help them learn how to move along in their own special but effective way. Teachers and assistants at school later on face the same task of assisting and enabling, but not pampering or undermining the disabled child, so as to allow for them to fulfil their potential and rise above themselves. (Maestro, 1998)
2.2.5. What are the different types and degrees of cerebral palsy?
Cerebral palsy as such does not manifest itself in the same way in every affected individual. There are different types of the disability (which rarely occur completely separately) and among them several degrees of it. (Feldkamp & Matthiaß, 1988) As I have found different experts to use different classifications, this section does not offer the one and only classification of the various emergences of cerebral palsy, but a way of distinguishing between the most common forms, which comprises several categorisations I have studied.
The rarest form of the disability is called ataxia. It affects only 5% of all people with cerebral palsy and leads to a disturbance of equilibrium, constant cocontraction (i.e., the simultaneous contraction of agonistic and antagonistic muscles; for example, the biceps and the triceps [Borchert, Sandra, n.d.]), which stems from an overmodulation in the central nervous system and results in impaired motor coordination. (Moosecker & Fries, 2006)
A more frequent form of cerebral palsy, mentioned in section 2.2.3., is called athetosis and affects 8 to 20%; although today it is less mentioned as a separate manifestation of the disability, but understood as one manifestation of dyskinesia, which also designates an “[i]mpairment of voluntary movement” (Roper, 1981, p. 99). Dyskinesia further comprises dystonia (i.e., intermittent spasms) and athetosis mixed with spasticity. Pure athetosis can look similar to ataxia, as it is also marked by an overmodulation of the motion system. Dystonic people are generally rather hypotonic with frequent shifts between hypertonia and hypotonia. This results in uncontrolled movements, speech problems, and a loss of control over one’s viewing direction. (De Clercq, 2015; Moosecker & Fries, 2006) Since my first participant Aaron is affected by athetosis with spasticity, it will be fascinating to find out how he managed to cope with these impediments during his school career.
It shall be just as interesting to find out the same thing about Ben, Dan, Evan and Fiona, who have the most common form of cerebral palsy, called spasticity, which affects 70 to 80%. It is
~ 17 ~ characterised by general hypertonia and cocontractions, which result in a faulty coordination of movement and posture, and subsequently muscle shortening. (Moosecker & Fries, 2006) (Once we understand this, it is also clear that the operation my brother has had, which was explained in detail in section 2.2.4.1., would, unfortunately, not be helpful to any patient with cerebral palsy, but only mainly spastic ones. Aaron would not gain significant improvement from such a procedure. [Nazarov, 2013])
A fourth type of cerebral palsy, which has only recently started to get mentioned as a separate manifestation of the disability, and is also described as non-spastic cerebral palsy in some places, is hypotonia. As explained in section 2.2.3., it characterises a below the norm muscle tone, leaving people affected by it very weak and passive. (De Clercq, 2015; Schwarz, 2007; “Types of Cerebral Palsy,” n.d.)
According to the affected body region, spastic cerebral palsy can be further divided into three different categories. We are talking of hemipeglia, or nowadays also unilateral spastic cerebral palsy, when only one body half is affected. Two further types called spastic diplegia and tetraplegia affect the entire body, however, usually more so the legs than the arms, and are thus also described as bilateral spastic cerebral palsy. (Feldkamp & Matthiaß, 1988; Gehrke, 2016; Moosecker & Fries, 2006) Weakened forms of the above are classified as hemiparesis, diparesis, and tetraparesis. (“Types of Cerebral Palsy,” n.d.) Seeing as all of my study’s participants are classified as plegic, I will, however, be using this term.
Figure 3: Spastic diplegia Figure 4: Spastic tetraplegia (Moosecker & Fries, 2006, p. 29) (Moosecker & Fries, 2006, p. 30)
Spastic diplegia is a much milder form, while people affected by spastic tetraplegia are always classified as severely disabled. While people affected by the first are often able to walk in some way (be it with the help of certain walking aids or actually all on their own) and can use their arms effectively, the latter makes it virtually impossible for them to ever acquire the ~ 18 ~ ability to walk independently and effectively, rendering them wheelchair-bound. (Feldkamp & Matthiaß, 1988) Unfortunately, however, this latter disability is the most common kind of birth defect in general. (“Tetraplegie, Diplegie, Hemiplegie,” 2001) It affects about 40% of all spastic children, while only 20% are diplegic. Another approximate 40% of people with cerebral palsy have hemiplegia. (Moosecker & Fries, 2006)
Seeing as one of my participants has athetosis (i.e., Aaron), 3 have spastic tetraplegia (i.e., Ben, Dan, and Evan), while 2 have spastic diplegia (i.e., Chris and Greg) and another one has spastic hemiplegia (Fiona), it will be fascinating to find out which difficulties different forms of cerebral palsy can bring along and how they might affect the listening, speaking, reading, writing, and concentration ability of my participants, and thus the success of their language education.
Within each of the above mentioned types of cerebral palsy, we can further distinguish between several degrees of severity. A gross classification only differentiates between mild (showing subtle symptoms that are not immediately recognisable and being able to walk independently), moderate (showing more apparent symptoms and possibly making walking aids necessary) and severe cerebral palsy (requiring a wheelchair and potentially making it impossible for the child to eat, drink, dress, and shower alone or even speak). (“Degrees of Cerebral Palsy,” n.d., “Types of Cerebral Palsy,” n.d.)
The state of Austria, however, will get more precise in its analysis of a person’s degree of disability, since many state services and grants depend on this very degree. Such services might be the free use of public transport, tax incentives, more holidays, or free parking. Grants can be given for necessary reconstructions on a car or a house which are adapted to the needs of the disabled person, or therapy that is necessary because of or conducive to a mitigation of the disability. These services are seen as a kind of compensation for disabled people’s disadvantages in life. (“Sonstige Beihilfen für Menschen mit Behinderungen,” 2016, “Überblick über Nachteilsausgleiche,” n.d.) Each physical, as well as mental, disability is divided into degrees of severity that range from 0 to 100% and are measured in intervals of ten. (“Anlage zur Einschätzungsverordnung,” 2010) These degrees imply to which extent the respective person’s disability restricts their body functions. (“Feststellung des Grades der Behinderung (GdB) - EVO,” n.d.)
Five of my participants have been diagnosed as 100% physically disabled, meaning that they are severely functionally limited and in need of a wheelchair. They need constant caring in all ~ 19 ~ aspects of everyday life, as well as regular therapy. In contrast, Fiona, a further participant in this present study, has got a physical disability degree of 60%, making her only moderately disabled with a clearly visible fine-motor disorder and loss in muscle control, yet – with many years of therapy – she has been able to learn how to walk freely without any aids. (“Anlage zur Einschätzungsverordnung,” 2010) Such differences in the severity of one‘s disability can greatly influence the amount of help and special arrangements one will need during their school routine, as will become clear in my empirical findings.
In addition to differentiating several degrees of disability, the state of Austria also distinguishes between several care levels, which indicate how much time carers must spend on tending to a disabled person and how much care allowance they shall receive for it. The care levels range from 1 (meaning that a carer must spend more than 65 hours a month on tending to their nursing case) to 7 (demanding more than 180 hours per month from the carer). (“Höhe des Pflegegeldes,” 2016)
We can see how this distinction is of particular importance, if we consider the fact that five of my participants, as well as my brother are 100% disabled, meaning that they need constant assistance, and yet my brother has learnt to drink from a glass by himself and eat chopped up food with a fork. This means he still needs assistance, but not as much as my participants Aaron and Evan, who still need someone to hold a straw to their mouths and feed them. His caring is not as time-consuming and exhausting. We can actually leave him alone within earshot for a few hours and he can mostly manage the TV or his laptop by himself. This leaves him with a care level of 6, which means that his carers, i.e., my parents and me, spend at least 180 hours per month on tending to him. One of my study’s participants, on the other hand, is classified with the highest level 7. This also means that his carers must spend at least 180 hours per month on him. However, it further specifies that he cannot use both his upper and lower extremities purposefully. (“Höhe des Pflegegeldes,” 2016) This is important to understand how different care levels manifest themselves in the respective person’s school routine and need for assistance, which will be demonstrated in my research findings.
Care levels can, of course, change if the disabled person improves or gets worse. My brother’s care level was first tested when he was an infant (by our general practitioner) and again when he was about to enter primary school. This time, a representative of the so called IHB (Individueller Hilfebedarf, i.e., Individual Need of Help [“Verein IHB: Individueller Hilfebedarf,” n.d.]) came to visit us at home to determine his care level once more, meaning,
~ 20 ~ to see what he could do and whether he needed an assistant at school. He was then granted a full-time assistant for his time at school, who – in our case – was a trained child minder.
2.3. Cerebral Palsy and the Language Classroom
2.3.1. Why should people with cerebral palsy be included in mainstream education?
“How often it is that we set ourselves in the high seat, judging others, not having read their book but merely having glimpsed the cover.” (Goodrich, 2015) People in general tend to make assumptions about other people. Within the first few moments of meeting someone our brain has already fabricated a more or less complete picture of them. (gs, 2015) Yet, it seems that for as long as people have been judging superficialities, others have been preaching its absurdity. Roman fabulist Phaedrus, who lived around Christ’s birth, already said that “the first appearance deceives many.” (“Phaedrus,” n.d.) French fabulist Jean de La Fontaine cautioned us around sixteen centuries later to “[b]eware [...] of judging men by their outward appearance.” (“Thoughts On The Business Of Life,” n.d.) English historian Thomas Fuller even called judging the “property of fools”. (Thomsett & Thomsett, 2009, p. 66) Award- winning comedienne, best-selling author, and actress Francesca Martinez warns in her book that “if you are ever saddled with the beautiful label ‘disabled’, be prepared for people’s expectations of you to plummet to frightfully low levels.” (2014, pp. 138–139)
Many parents of physically disabled children fear that their child’s academic potential will be underestimated; a concern that is not unfounded, as cerebral palsied children’s ability to learn foreign languages is often questioned due to ignorance. (Bläsig, 1982; McColl, 2002) It is easy to believe that a physically disabled person will never be good at any sports and that a mentally disabled person will not succeed academically. It might also be easy to believe for some people that a person with a severe speech impairment will never be able to or want to make the effort to learn another language besides their mother tongue. However, as with non- disabled children, every disabled child is different and possesses different physical, mental, psychological, and linguistic abilities. What does apply to every cerebral palsied child is that education is vital for them, as it trains their brain and in doing so enables them to expand their physical abilities as well. Therefore, a cerebral palsied child’s education should start as early as possible – for example, via early support (Ger.: Frühförderung) – at home, even before their enrolment in the school system, and should be assisted by social pedagogues, as they will know how to boost the child but not overexert and demotivate them. (Bläsig, 1982; Head Start Center for Inclusion, n.d.) ~ 21 ~
Rigorously expecting too much from them and setting unrealistic goals can be detrimental to any child’s motivation and has shown to be a particular issue some educators of children with cerebral palsy are facing. Kunert and Friedrich have found that parents of children with cerebral palsy can – due to the immense psychological stress of having to care for a severely disabled child – become rather insensitive, very strict and even punitive in their handling and expect too much from their child, especially in regards to their school performance. (1982)
However, as counterproductive as such a strict education might be, it is just as crucial for parents, teachers, peers, and the likes of disabled people to shed false assumptions about future failures or inadequacies of their disabled child, student, or friend. The only purpose such assumptions serve is to function as a barrier that keeps the disabled child from achieving and wanting to achieve as much as they possibly can. Effective studying and learning is best done if the child does not suffer from any extrinsic pressure set by false expectations, and can regulate stress and relaxation within themselves. (Kunert, 1982; McColl, 2002)
Teacher Katie Quartano, who is involved in the Disabled Access Friendly Campaign, writes that “[p]hysical disability is one of the many forms in which human life occurs, [...] and the people concerned should not be excluded in any way from participating in society. Their lives should differ as little as possible from those of people without disabilities.” A child cannot realise their maximum potential if they are denied the chance to do so by being put in an environment that restricts their ability to challenge and rise beyond themselves. (2011)
Mainstream education does not only further a cerebral palsied child’s intellectual level to a much higher extent than special education, it also promotes social and communicational competences, which are essential for children with speech impairments, as well as self- confidence, in a way special education never could, because it does not merely tell the child that they are equal to everyone else, it shows them that they are. Likewise, non-disabled students also learn to accept and respect disabled students as equals and are not fazed by their appearance and behaviour. This sets the stage for an entire society filled with disabled and non-disabled people who view themselves as equals and treat each other accordingly, meaning with neither contempt nor excessive caution. If children learn to accept all kinds of differences at an age where their perceptions are not yet tinted by prejudices, non-disabled students can grow into tolerant adults who accept difference as a natural part of life that always entails certain weaknesses but also strengths in another person, which oneself does not possess. (Quartano, 2011)
~ 22 ~
Even Martinez, who is affected by cerebral palsy and a speech impairment herself, recalls an instance in her book, in which she was sat next to a severely speech disabled girl and felt extremely uncomfortable, because she was not used to experiencing such difference, and did not know how to handle it and how to interact with the girl. She believes that if she had grown up among children with the same kind of disability as the girl, she would have been a lot more confident in the related situation and could have interacted successfully with the girl. (2014) “Real exposure to difference is the only way to combat the fear and prejudice that arise out of ignorance and lack of experience.” (Martinez, 2014, p. 272)
2.3.2. How is social behaviour affected by cerebral palsy?
„Dennoch stellt sich die Frage, ob die Bewegungsstörung wirklich die einzige Ursache für die veränderte Wechselbeziehung zwischen Individuum und Umwelt ist. [Nevertheless, the question raises itself, whether the movement disorder is really the only cause for the altered interrelation between individual and environment.]“ (Ferrari et al., 1998, p. 20) Any physical disability, deformity, or abnormality never plays out simply on the physical level. The psychological level that goes with it is almost as important as the physical one (if not more so) and can severely hinder physical progress. As has already been explained in section 2.2.4.2., in the case of cerebral palsy specifically, a troubling because often too close parent-child relationship has been the topic of some discussion. Seeing as the severely disabled child will need and depend on their parents for most things and the loving parents will want to enable their child to have the best possible life, their bond will inevitably be extraordinarily close. In some situations, as was the case with my brother, this can later on lead to a heightened need for independence, which I personally have never felt as strongly as my sibling. Other cases, however, may never find their way out of this dependence. This can be hugely detrimental to the child’s development and the desired improvement of their condition. (Ferrari et al., 1998)
Some speak of a palsy of intention when the disabled child does not attempt to reach their full potential, because they live through their parent(s), assuming their reality, healthy body, and abilities, rather than admitting their own abilities and restrictions, and tackling them. „[D]urch den Körper und den Geist eines anderen Menschen leben sie eine Illusion der Realität, die sie daran hindert, die eigenen Grenzen zu erleben. [Through the body and spirit of another person they are living an illusion of reality, which is preventing them from experiencing their own limitations.]“ (Ferrari et al., 1998, p. 22) This is a phenomenon I have myself often seen in my brother, who has always loved to watch his friends play games and run around, while never
~ 23 ~ feeling left out. He was rarely physically right in the middle of the action, but always felt like he was, and was thus never sad about missing out on being able to run and play along. This ability to participate in society despite one’s obvious disadvantages is, of course, a wonderful thing, as long as it does not make the disabled child dependent upon other people’s realities and neglectful of their own. It is therefore vital for parents to know that there is such a thing as too much care and assistance. If we raise disabled people like eternal children, that is what they will remain and furthermore be seen as by society. If everything is always being done for them, they will never develop the self-confidence to know that there may be more things than they ever would have imagined that they can do all by themselves. (Feldkamp & Matthiaß, 1988)
This is something my entire family has had to learn over the years that my brother was growing into an adult. We had to learn not to help him with everything anymore and let him learn to do some things on his own, such as eating or brushing his teeth. The dinner table will never remain as neat as when we feed him, and his teeth will never be as clean as when one of us brushes them for him, yet, it is vital for my brother, in order to feel like the grown man that he is and wants other people to see in him, to know that there are things that he does not need assistance with and can manage on his own. As was already mentioned in section 2.2.4.2., it is this adequate and productive amount of assistance and distance that a disabled child needs in school as well, in order to meet their full potential, and stay motivated to keep learning and achieving new goals. (Maestro, 1998) I am intrigued to find out how my participants’ teachers and assistants manage(d) this balancing act, and how content their cerebral palsied students are with the amount of support and assistance they receive(d) at school.
2.3.2.1. Challenging behaviour due to cerebral palsy
Some cases of cerebral palsy show specific kinds of challenging behaviour, which do not have to occur with every child, and are not imperatively to be traced back to a person’s cerebral palsy. It has, however, been found that especially the speech impairment which usually accompanies cerebral palsy, depending on its severity, can lead to challenging behaviour. This may include self-injuring (such as head-banging, scratching, or grinding one’s teeth), aggressive behaviour towards others (such as biting, scratching, or hitting), stereotyped behaviour (such as repetitive movements, and speech), as well as non-person directed behaviour (such as the damaging or stealing of property, temper tantrums, or hyperactivity). People who display this kind of behaviour do not usually aim to upset or hurt the people
~ 24 ~ around them. They simply have no other way of expressing themselves. What they desire might be to avoid something or achieve self-stimulation. Sometimes they simply want to gain others’ attention. If the latter is the case, giving them the necessary tools to express themselves either verbally or non-verbally can make a huge difference. (Capability Scotland, 2012) Haidvogl has experienced challenging behaviour among 12 people out of a total of 20 he studied. (1983) Such behaviour has been found to occur mostly among men between the ages of 15 and 34 who have speaking difficulties. (Capability Scotland, 2012) Since most of my participants meet all of these three criteria, I will question their educators on whether they have encountered any challenging behaviour from them, and if so, how they dealt with it.
2.3.3. How is intelligence affected by cerebral palsy?
Around 40% of all people with cerebral palsy show a normal intelligence level, meaning that they possess a minimum IQ of 90 and can pass elementary school, while more than 1% show above average intelligence. (Bläsig, 1982; Hahne, 2006; Wichers, Hilberink, Roebroeck, van Nieuwenhuizen, & Stam, 2009) Although older studies do not indicate significant intellectual differences between the three most common types of cerebral palsy, leaving spastic people with an average IQ of 68, while athetoid people follow closely behind with an average of 67 and atactic people are said to have the lowest medium IQ with 62, newer studies have shown that people with spasticity are actually more commonly affected by oligophrenia4 than athetoid people. (Hahne, 2006; Krenkel & Bröcheler, 1982)
However, more important in its effect on intelligence than the type of cerebral palsy is the respective person’s degree of disability. The more physically disabled a cerebral palsied person is, the more mentally disabled they are. Three quarters of monoplegic people (meaning that only one of their limbs is affected [“Types of Cerebral Palsy,” n.d.]) demonstrate a normal level of intelligence, while only 17% of tetraplegic people do so. (Krenkel & Bröcheler, 1982) Feldkamp and Matthiaß even claim the percentage of tetraplegic people with normal intelligence to be significantly below 0,5%. (1988)
Interestingly, the above mentioned equation of physical disability entailing mental disability works both ways. A cerebral palsied infant will also be more physically disabled the more
4 Oligophrenia designates some kind of mental deficiency, also called “[s]ubnormality”. (Roper, 1981, p. 212) “Mentally disabled” or “mentally challenged” have been suggested to be acceptable terms to describe people with oligophrenia, while calling someone “mentally retarded” has fallen out of use in recent years due to it not being deemed politically correct. (“Politically Correct,” 2002) More on political correctness and my standpoint towards it can be read in section 3.3.2. ~ 25 ~ mentally disabled they are. The reason for this being that the decelerated development of their intelligence reflects itself in the pace of the disabled child’s motor development. If the child’s intelligence does not evolve past the infant stage, they will never be able to acquire higher motoric skills that require a higher level of intelligence than that of a toddler. (Feldkamp & Matthiaß, 1988)
Considering the fact that I will be studying mostly secondary school graduates and even a university student, I will now, however, take a closer look at the possible learning difficulties cerebral palsied people with an otherwise normal intelligence level might face. Wichers, Hilberink, Roebroeck, Nieuwenhuizen and Stam have found almost a third of the cerebral palsied students they examined to have learning disabilities. (2009) Interestingly, although they only studied 119 Dutch students between the ages of 6 and 19, this percentage can be transferred to the general distribution of learning disabilities among people with cerebral palsy. (Bläsig, 1982; Hahne, 2006; Wichers et al., 2009)
[Zerebralparetische Personen] lernen nicht generell weniger, aber viele brauchen dazu mehr Zeit. Die Lernzuwachsrate ist erheblich verlangsamt, der Lernfortschritt zeigt zudem einen unregelmäßigen, diskontinuierlichen Verlauf. (Leyendecker, 2005, p. 97)
Cerebral palsied people do not generally learn less, but many need more time for it. Their rate for learn intake is severely decelerated and their learning progress shows an irregular, discontinuous progression.
Theorists differentiate between general intelligence or mental ability, and learning ability. (Feldkamp & Matthiaß, 1988; Hahne, 2006; Wichers et al., 2009) We are talking of a learning disability when the student needs about double the time to acquire the primary teaching content that a non-disabled child would, while a mentally disabled child might not be able to learn the same content at all and remain stuck in a rudimentary mindset. (Feldkamp & Matthiaß, 1988; Schwarz, 2007) The reasons for the extra time a cerebral palsied student might need can be manifold. It might actually be that the child needs more explaining and more time to understand a specific subject matter. The damage done to their brain functions may, however, also result in general restlessness, a lack of concentration, distractibility, and mood swings. (Neuhäuser, 1999; Moosecker & Fries, 2006)
In any way, the assessment of these children’s intelligence level is complex and should be exerted by experienced professionals, as even a highly intelligent student may need more time than their non-disabled peers, due to the decelerated physical reactions their disability implies. Since 1949, with several updates along the way, the so-called WISC (Wechsler Intelligence ~ 26 ~
Scale for Children) has proven to be effective especially with not too severely speech impaired cerebral palsied children between the ages of 6 and 16, as it differentiates between verbal IQ, performance IQ, and general IQ, as well as time-dependent and -independent exercises. (Bläsig, 1982; “Wechsler Intelligence Scale for Children,” n.d.)
As the previous quote clarifies, the extra time cerebral palsied students need does not mean that they cannot eventually learn the same amount as non-disabled children. It merely signifies that some extra effort is necessary to achieve such a goal. It has even been found that the majority of people with cerebral palsy – even ones with severe brain injury – show excellent short- and long-term memory. (Feldkamp & Matthiaß, 1988) For example, I am positively surprised by the immense historical knowledge my friend and participant in this study Evan has gained throughout his studies. My brother, too, can remember occurrences, names, dates, and melodies better than most people I know. Martinez even claims to remember an event from the time she was only three years old. While it is very likely that her memory, as well as her mother’s account of said incident, has strongly shaped her view of the past, it is rare to have any image at all from an age as early as three years old. (2014) A strong memory is, of course, beneficial to language acquisition, especially when it comes to the intake of new vocabulary, as will present itself in my research findings.
2.3.4. How are language and speech affected by cerebral palsy?
Die Motorik und jedenfalls in ihrem motorischen Anteil auch die Sprache gehören zu den wichtigsten „Werkzeugen“ des denkenden und wollenden Menschen; sie haben auszuführen, was die darüberstehende Person intendiert. Sind jene Werkzeuge gestört, so erscheint dadurch die gesamte Persönlichkeit auf ein tiefes Niveau herabgedrückt; der Defekt wirkt schlimmer, als sich das bei genauer Kenntnis bestätigt, weil eben das, was an Fähigkeiten noch vorhanden ist, nicht ausgedrückt und ins Werk gesetzt werden kann. (Asperger, 1982, p. 172)
Motor skills, and in any case also speech in its motoric proportion, belong to the most important “tools” of the thinking and desiring human; they must exert what the superior person intends. If those instruments are impaired, the entire personality seems to be degraded to a low level; the defect appears to be worse than can be confirmed upon more accurate understanding, because what is left of one’s competences simply cannot be expressed and put into practice.
As we have learnt, cerebral palsy is not imperatively accompanied by a lower IQ. A severe speech impairment can, therefore, be particularly frustrating to people with normal or even above average intelligence, as they are easily underestimated. Evan is severely disabled and has a strong speech impairment. Yet, he has successfully graduated secondary school and is now a decent university student, while most of my other participants have mild to strong ~ 27 ~ speech impairments too, graduating different secondary schools without issues and with top English grades nonetheless.
The Cerebral Palsy Foundation writes that 1 in 5 cerebral palsied people are affected by communication difficulties, while another study found that 1 in 2 out of 129 examined Swedish children with cerebral palsy had some kind of speech difficulty. (“Communication Classification,” n.d.; Lyford, 2012) When it comes to schooling a cerebral palsied child, it is vital to analyse the origin of such difficulties, meaning whether they are linked to the student’s motor dysfunction and to be classified as dysarthria (i.e., a speech disorder), or whether they are caused by the lesion of a specific brain area and to be classified as dysphasia (i.e., a language disorder). (Hahne, 2006; Neuhäuser, 1999)
2.3.4.1. Language disorders due to cerebral palsy
Language disorders are central dysfunctions, caused by damage in a specific brain area. Approximately 50% of people with cerebral palsy are affected by them, although newer reports show that these people’s language development rarely falls significantly under that considered the norm, especially among those that do not suffer from cramping seizures. If it does, however, the child always shows either a learning or a mental disability. They may speak few words, if any at all, and forget new words easily. (Feldkamp & Matthiaß, 1988; Hahne, 2006; Johannsen & Rennhack, 1982; Loebell, 1974)
Another reason for low language competence in a cerebral palsied child may stem from impaired hearing, which can further lead to behavioural problems, often caused by the lack of an ability to communicate, as was established in section 2.3.2.1. However, the discussion of a possible hearing impediment is not as relevant today as it used to be, since better pre- and perinatal baby care, as well as a decrease in hyperbilirubinaemia (i.e., excessive bilirubin5 in the blood [Roper, 1981]), has led to a significant decrease in hearing damages among people with cerebral palsy. While 21% of cerebral palsied people born in the early 1950s were diagnosed with a hearing impairment, only 5 to 15% born in the late 1990s were given the same diagnosis. (Gersh, 1998; Hahne, 2006; Johannsen & Rennhack, 1982)
Nevertheless, especially sensorineural deafness (i.e., “nerve deafness” [Roper, 1981, p. 272]) and the loss of hearing higher pitches is a problem some cerebral palsied people are facing,
5 Bilirubin is “[a] pigment largely derived from the breakdown of haemoglobin (i.e., “the respiratory pigment in the red blood corpuscles.” [Roper, 1981, p. 136]) from red blood cells destroyed in the spleen.” (Roper, 1981, p. 41) ~ 28 ~ which can significantly affect their language competence. The reason being that hearing is the first thing a child does, even before opening their eyes. It has a much greater impact on their psychological and intellectual development than seeing. The cause for such hearing problems is most often asphyxia (a decrease of O2 in the blood and increase of CO2, paralysing the respiratory centre and leading to suffocation [Roper, 1981]) with a long lasting hypoxia (i.e., “[d]iminished amount of oxygen in the tissues” [Roper, 1981, p. 154]) or anoxia (i.e., “no oxygen in the tissues” [Roper, 1981, p. 20]). (Johannsen & Rennhack, 1982)
Figure 5: Language Figure 6: Language and speech disorders (Johannsen & Rennhack, 1982, p. 323) (Johannsen & Rennhack, 1982, p. 325)
The above left illustration shows a communication model depicting the way in which language development works in the human brain. It is clear to see that hearing is the very first thing we do and can thus easily be understood that an impairment in this area does not inevitably but may reflect itself in the following stages (i.e., understanding language, processing it, developing speech patterns, and eventually uttering them). The right illustration shows the same communication model, including possible language and speech problems (which are discussed in the following section) of a child with cerebral palsy. An early diagnosis is very important in the success of a hearing impaired child’s language and speech development. It is only then that adequate measures can be met to insure that the child’s language development is best aided and supported. (Johannsen & Rennhack, 1982) ~ 29 ~
After we hear something, we (ideally) understand it, and process it, before we eventually develop motoric language patterns, and speak for ourselves. Cerebral palsied children might have a peripheral dysfunction leading to a hearing impairment, which can further lead to a central perceptive language disorder, making it hard for the child to understand what they have heard rarely or not at all. Since the child will then not be able to process correct language input, their language development is delayed. They can further develop a central expressive language disorder, obstructing the child’s own development of motoric language patterns and eventually resulting in a speech disorder, such as dysarthria. (Johannsen & Rennhack, 1982)
Although language development usually follows the above illustrated path, even if one or more stages are left out or impaired, we have already established that language disorders do not necessarily always stem from a hearing impairment which then reflects itself in the next stages of the child’s language development. However, neither can a low level of intelligence be blamed in some cases. The child’s language competence might develop normally up until any point in the illustration and then suddenly stagnate or slow down. The result can be one out of a variety of diverse language disabilities. (Johannsen & Rennhack, 1982)
For example, the child might show a central receptive language disability. This would mean that despite intact hearing and normal intelligence they are unable to recognize certain acoustic stimuli. Such a disability might range from sound agnosia (i.e., not being able to differentiate similar sounds) to word agnosia (i.e., not being able to understand language) and even general acoustic agnosia (i.e., not being able to recognize any acoustic sound). Affected children usually show a significant speech development disorder, react better to visual stimuli and try to communicate via gestures. A diagnosis of central receptive speech disorders is unfortunately very complicated and difficult, as affected children are often thought to have a hearing impairment and/or a decreased intelligence level. (Johannsen & Rennhack, 1982)
Another possible language disorder among cerebral palsied people showing intact hearing and normal intelligence, as well as intact language comprehension and mouth motor activity, is a central expressive language disability. This disability can manifest itself mainly in three different ways. Firstly, affected children might hear, comprehend, and remember words when other people are uttering them, but might not be able to remember them when talking themselves. Alternatively, other children might remember such words when talking, but not be able to use them correctly in terms of grammar. Finally, other children might remember words, but not find adequate motoric speech patterns to use them themselves. This might lead
~ 30 ~ to persistent stammering, or, in more severe cases, a significant delay in the child’s language development, and communication via gestures. Central expressive language disorders, therefore, imply that the affected child realises their mistake but lacks the ability to correct it. This can again lead to difficult behaviour stemming from communicational difficulties. (Johannsen & Rennhack, 1982)
2.3.4.2. Speech disorders due to cerebral palsy
Speech dysfunctions may also result from an undiagnosed hearing impairment, or really any other language disorder, as speech itself is the very last stage in the polyphase process of language acquisition and development. However, since hearing impairments, as well as the failure to recognise them, have become increasingly rare over the years, and all but one of my participants have acquired either above average or at least age-appropriate levels of linguistic competence, showing no symptoms of language disorders or any kind of hearing impairment for that matter, I shall now focus on speech disorders caused purely by the motoric impairment of a cerebral palsied child with normal or even above average intelligence. (Brown, 1967; Johannsen & Rennhack, 1982)
Actual speech disorders are peripheral dysfunctions. (Hahne, 2006) It is rather obvious that people with severe cerebral palsy, who lack control over their cervical muscles and the positioning of their head, will have problems controlling their jaw, lips, tongue, palate, and speech movements, and is thus not surprising that despite the ratio of cerebral palsied people with mild to severe speech impairments having gone down over time – from 70% in the 1960s to just over 50% today – it is still a common issue among these people and assumedly in their academic language education in particular. (Brown, 1967; Johannsen & Rennhack, 1982; Lyford, 2012) Newer research suggests that the timing of the cerebral lesion is a deciding factor in whether the cerebral palsied child will have speech problems and to which degree. Injuries occurring around the beginning of the third trimester usually left children without any speech problems, while injuries around the time of birth lead to many non-verbal children. (Lyford, 2012)
Johannsen and Rennhack explain that speech disorders are „Störungen der Aussprache infolge Erkrankungen der zerebralen Zentren, Bahnen und Kerne der am Sprechorgan beteiligten Nerven [dysfunctions of articulation caused by disorders of the cerebral centres, tracts, and nuclei of the nerves participating in the speech organ].“ (1982) Such disorders lead to inadequate coordination of the organs participating in the speech act, which results in ~ 31 ~ problems with articulation, phonation, and speech respiration. (Hahne, 2006; Johannsen & Rennhack, 1982; Loebell, 1974) Especially speech sounds that are physiologically challenging to produce, such as [ʧ], [ʃ], [s], [z], [θ], and [ð] (as opposed to [b], [d], [m], and [n], the sounds first learned by the non-disabled infant) are often difficult to master for cerebral palsied people. (Brown, 1967)
Even things done naturally and without effort by non-disabled people, however, such as swallowing, can become a challenge, which can lead to salivation; an issue that might come up again in my empirical research, when I will be examining the classroom atmosphere, and relationship between my participants and their peers, as I have experienced some children feeling slightly disgusted by another kid drooling and thus turning away from them. (Loebell, 1974) Speaking itself might also pose as a barrier in said relationship between a disabled and a non-disabled student, as it requires a lot of concentration from the cerebral palsied person and can make it hard for them to be involved in any other activity during the act of speaking. (Johannsen & Rennhack, 1982)
My brother, for example, cannot ride his wheelchair while talking, which means that whenever we walk along anywhere and he starts talking he will automatically stop riding until he has finished speaking. In school, his friends solved this problem by pushing him along. However, Aaron and Evan unfortunately did not have the amazing and tolerant friends my brother had in school. They were excluded by their classmates and often made fun of, because their peers could not communicate with them like they could amongst themselves. Thus, they cast them out, which made them nervous and as a result made talking to their peers even harder for both of them; the reason being that when a cerebral palsied person is excited, nervous or angry, their speech problems can worsen as their breathing movements become more uneven and the strain stimulates large areas of the cerebral cortex, which complicates the differentiation between different nerve cells’ reactions. (Doroftei, 2015; Schwarz, 2007)
In the course of my empirical research, I was able to directly observe a situation like the ones Aaron and Evan have often experienced with Fiona, who does have close friends in her class, but gets teased by other children in her school. She too seems to find it harder to speak, the more upset she becomes with them. As a result of their emotional agitation, a cerebral palsied person’s speech can become very loud, sharp, compressed, and intermittent. They may not manage to produce certain sounds, usually the letters r and l, as well as sibilants, anymore, as
~ 32 ~ those require fine-motor movements from the tip of the tongue; a kind of activity too controlled and precise for the agitated cerebral palsied person. (Loebell, 1974)
However, the issues that might arise when an agitated person with cerebral palsy is talking are not restricted to their facial area. They are often overcome by involuntary, uncoordinated movements, a loss of control over the positioning of their head, and tonus shifts in their mimic, as well as their articulation musculature. I am familiar with this phenomenon from seeing my brother talk when he is nervous or agitated, in which state his speech does not only become less intelligible but he becomes more stiff all over, tilts his head backwards, and pulls his hands towards his upper body in tight fists. A different example to these speech problems will present itself when I interview Chris, who is affected by hypotonia, meaning that his speech can become increasingly slow, monotonous, and badly articulated. (Loebell, 1974)
All of the above described speech issues are of great importance to the language classroom and thus the main focus of my study, since it proves what Martinez has also explained in her book, which is that symptoms of cerebral palsy worsen when the affected child is in a bad mood or feels uncomfortable. (2014) This is something teachers and assistants should bear in mind when trying to create a positive and relaxed classroom atmosphere. More so than that of the non-disabled child, especially the cerebral palsied one’s performance will profit from a good, inclusive, and tolerant ambience which accepts them for who they are and their utterances for what they sound and look like.
Often, the cooperation between nasal and oral respiration is impaired as well, complicating the controlled formation of voiced and unvoiced sounds. (Johannsen & Rennhack, 1982) So far, I have only experienced this dysfunction when seeing my brother drink. He cannot drink through his mouth and breath through his nose at the same time, which means that he is usually rather out of breath after drinking a large amount at once. It will be interesting to find out, whether my participants’ English teachers and assistants train(ed) correct voicing with them, since it does have more importance in the English language than in Austrian German, whose speakers rarely use any voiced sounds at all. (Ebner, 2008)
Depending on the disability’s severity and distribution across an affected person’s body, a person with cerebral palsy can have mild to severe speech problems. (Loebell, 1974) They may range from dysarthria (i.e., impaired articulation due to a neurological injury of the motor-speech system [“Dysarthria,” 2016; Roper, 1981]), which affects 30 to 50% of cerebral palsied children, to anarthria (i.e., the maximum speech disorder caused by impaired control ~ 33 ~ over one’s speech organs due to neurological damage [“Anarthrie,” 2013]), which affects 10 to 20% of children with cerebral palsy. While the first causes blurred and difficult to understand speech, and further entails dysrhythmia (i.e., disordered speech rhythm) and dysphonia (i.e., disordered vocalisation), the latter makes it impossible for an affected person to speak at all, which further complicates the diagnosis of such a child’s linguistic problems as a speech or a language disability. (“Anarthrie,” 2013; Feldkamp & Matthiaß, 1988; Hahne, 2006; Kien, 2004)
Dysarthria can be subdivided into three different kinds, depending on where in the brain the damage was done. However, these forms rarely appear separately, making it hard to detect the exact place the injury happened. Pyramidal dysarthria is the result of damage in the pyramidal tract and manifests itself in clumsy, hypertonic, and cumbersome movements of the mimic and speech musculature. Speech becomes unclear, blurred, and nasal, and vocalisation is compressed or voiceless. Extrapyramidal dysarthria is a more severe speech disorder. Speech pace, rhythm, melody, and volume are much more disturbed than with pyramidal dysarthria. Affected people usually talk slowly, monotonously, and loudly. Cerebellar dysarthria is the result of damage in the cerebellum, a brain area which can be seen in Figure 1 in section 2.2.1. It results in coordination disorders, as well as problems with tonus regulation, making speech erratic, unfluent, often compressed and hypernasal. The pace of speech might be accelerated, as well as decelerated. (Johannsen & Rennhack, 1982)
Approximately 30% of children with cerebral palsy suffer from dysarthria, whereby people with athetosis (such as Aaron) are most commonly affected by it, making up a staggering 70% of all speech impaired cerebral palsied people. Their immense speech problems and the loss of control over their mimic and gestural expressions stand in ironic contrast to most athetoid people’s intelligence level, which is often only slightly or not at all compromised compared to the norm. In addition, it can be very complicated to examine their intelligence, due to their motor dysfunctions, which can make it impossible for them to use their hands effectively, or speak as quickly as a non-disabled person would under the time pressure of an intelligence test. (Asperger, 1982; Johannsen & Rennhack, 1982) Two of my participants, that is Aaron and Evan, exhibit above average intelligence and English language competence in combination with a severe motor impairment, resulting in gravely restricted control over their arms and hands, as well as a severe speech impairment. Therefore, in the empirical section, I wish to explore whether and how they, as well as their teachers and assistants, might have managed to bridge the gap between competence and performance. ~ 34 ~
2.3.4.3. What can be done to improve the speech of a cerebral palsied child?
As we have learnt, cerebral palsied people’s speech problems are often merely a result of their motor impairment. A non-disabled infant’s primitive movement patterns are later obstructed and replaced by more complex ones. This is often not the case with cerebral palsy. Seeing as problems in the oral area result from irreparable damage in the central nervous system, which hinders the child from developing certain higher movement combinations, a cerebral palsied child requires a different kind of speech therapy than other children with speech disorders. However, as is usually the case, in order to achieve the best possible results, it is important to start treatment as early as possible. Even before the child should start uttering their first sounds, possible speech problems can be detected, and appropriate physiotherapy can be initiated, as the child’s articulation musculature is identical with their chewing and swallowing musculature. The exact therapeutic process is different with every individual, as every child comes with different requirements, that is, a different kind of cerebral palsy, and a different relationship to their parent(s) and therapist. A vast number of people play crucial parts in helping to improve the cerebral palsied child’s speech. (Johannsen & Rennhack, 1982; Kien, 2004; Loebell, 1974; Neuhäuser, 2006; Schwarz, 2007)
First of all, physiotherapy is a necessary means to help the child gain more control over their body, and prepare them for the complex and – in the case of cerebral palsy – exhausting act of speaking. Therapy can teach the child to have better control over their head and torso musculature, and prevent intense muscular tension while they are speaking. Furthermore, trained speech therapists and curative teachers specialised on speech disorders should be working regularly with the child. (Kien, 2004) The first thing a speech therapist is likely to analyse are the child’s relationship to their parent(s) and their reactions to their immediate environment. How does the child react when they are spoken to or touched? (Moosecker & Fries, 2006)
Die Variabilität von Bewegungen in der physiologischen Entwicklung deutet auf ein normales Funktionieren des ZNS hin. Stereotypien von Bewegungen deuten auf eine pathologische Entwicklung hin. Während sich das normal entwickelnde Kind an die Umgebung anpaßt [sic], gelingt dieses dem zerebral bewegungsgestörten nicht. [...] Wenn ein Kind diese Stellreaktionen [Kopfheben,..., Gleichgewichtsreaktionen,...] nur unzureichend oder gar nicht entwickelt, wenn es seine Körperhaltung also nicht willkürlich verändern kann, dann gehen ihm wichtige Erfahrungen sowohl im taktil-kinästhetischen Bereich als auch im optischen und akustischen Wahrnehmungsbereich verloren bzw. es macht nur eingeschränkte Erfahrungen. (Johannsen & Rennhack, 1982, p. 334)
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The variability of movements in the physiological development points to a normal functioning of the central nervous system. Motor stereotypies point to a pathological development. While the child with normal development aligns themselves to their environment, the child with a cerebral physical disability does not manage to do so. [...] If a child develops these positioning reactions [lifting one’s head,..., equilibrium reactions,...] insufficiently or not at all, meaning that they cannot change their posture arbitrarily, they miss out on or only have limited discovery of important experiences both in the tactile-kinaesthetic range, as in the optic and acoustic perceptual range.
Regardless of any possible mental disability that might accompany cerebral palsy, this shows us that physical disability alone can cause developmental disorders, and influence the disabled child’s perception and knowledge of the world around it. Physiotherapists and speech therapists can try to work against this, and help the child gain more control over their body in general and their speech apparatus in particular, and in doing so allow for the child to experience their environment more consciously, which eventually leads to better absorption of said environment and cooperation with it. In school, this means that if the child can react to their fellow human beings accordingly, they can more easily become an integral and equal part of their school environment. Also, in order to be able to read what is put in front of them or written on the board, the child must have a certain amount of control over the positioning of their head and their eye movement. (Brown, 1967; Johannsen & Rennhack, 1982)
Therefore, concrete speech therapy starts when the child is about 4 to 5 years old, depending on their level of development, after they have already gained some control over their body, and learnt to tolerate being touched directly in the face by their therapist. Simply showing the child how to produce sounds correctly, and having them try to imitate them is often not an effective strategy, as it can lead to intense hypertonia in the concentrated and possibly nervous child. What they must learn is to control their entire body to some degree; that is, keep it as calm as possible during the act of speaking, keep their head up and their arms relaxed, and control the positioning of their jaw. Concrete measures of speech therapy include blowing exercises, lip and tongue exercises, and even massages. All of the mentioned serve to strengthen the soft palate, and improve articulation and oral fluency. (In some cases where speech therapy alone does not bring the desired outcome augmentation pharyngoplasty is a possible solution. It is an operation, whereby soft tissue is sown into the formerly too short soft palate, in order to reduce hypernasal speech.) (Johannsen & Rennhack, 1982; Loebell, 1974; Wirth, 2000)
In order to ensure and encourage the child’s relaxation and motivation during the early stages of training, therapists will praise and reinforce every utterance the child makes. In a more ~ 36 ~ advanced stage, they will additionally confront their student with auditory and also visual stimuli. In this phase, it is very important for the therapist to know of any possible hearing or seeing impairment the child might possess. All of these stages can eventually help a cerebral palsied student communicate effectively with their peers and teachers, by speaking in a way that everybody can understand. Also, they can learn to speak while listening to or seeing something, for example, when having to repeat something they have heard in class while the audio is still running, or when having to read something aloud. It is, however, relevant to note that speech therapy for the severely cerebral palsied child often does not aim for what is considered normal speech development, but rather seeks to find the respective child’s optimal individual way of communication. (Johannsen & Rennhack, 1982)
Da die Kommunikationsfähigkeit einer der wichtigsten Faktoren ist, um auch behinderte Menschen zu integrieren, sollte man technische Hilfsmittel oder Symbole einsetzen, die das ersetzen, was mit der Sprachtherapie nicht erreicht werden kann. (Kien, 2004, p. 21)
Seeing as communication skills are among the most important factors in integrating disabled children, technical aids or symbols should be used which replace what cannot be achieved through speech therapy.
Not every child with cerebral palsy will be able to speak directly. However, modern technology has provided many tools for mute people which help them speak for themselves. Kathrin Lemler, for example, a German woman with cerebral palsy who cannot speak, has learnt to communicate via a computer that is attached to her wheelchair. She writes about how strenuous it used to be, if people – usually ones who did not know her well – would struggle to understand her, how not being able to ask her parents questions about the world as a young kid made her sad at times, and how she became an outsider amongst her neighbourhood, because other children did not know how to communicate with her and consequently did not want to play with her. Now, she has proven what can be achieved with the right amount of help and motivation. Kathrin has graduated from secondary school, written a book, and is even giving speeches. (Lemler & Gemmel, 2005)
In any way, significant others (i.e., parents, relatives, teachers, assistants, peers, friends) of people with a severe speech impairment, be it due to cerebral palsy or any other physical condition, must learn to refrain from speaking for the disabled person, but show patience and let them finish what they want to and can say for themselves. This is imperative in order for speech disabled people to be integrated among others as equal members of society. They have got something to say too. They may simply need more time and a concentrated ear to get their message across. (Johannsen & Rennhack, 1982; Kien, 2004) ~ 37 ~
2.3.5. How should a teacher/assistant work with a child with cerebral palsy?
I am very intrigued to find out how my participants’ teachers approached the new task they were facing when they knew they would be having a cerebral palsied child in their classroom again or for the first time. I can only imagine it to be rather intimidating, since one does not want to make any mistakes and treat the disabled child unfairly. In her book, Martinez recalls how her high school teacher first introduced her to her new peers, and how uncomfortable and distinctly different it made her feel. (2014) The influence a teacher can have on their pupils’ opinions and views on things and people is something any teacher of a disabled child should bear in mind. Therefore, I will initiate this section by examining how teachers can promote a positive and inclusive classroom atmosphere that encourages non-disabled students to view their disabled peers as equal members of the group, before eventually investigating how teachers and assistants of cerebral palsied children should cooperate with them in order to get the most out of them, and treat them fairly and equally.
2.3.5.1. The importance of classroom management
As we have already learnt, a positive classroom atmosphere is vital to the academic success of a cerebral palsied child, especially in regards to their active in-class performance. However, it has been established to be essential to any form of classroom-management, whether the respective class includes a disabled child or not. In order for students to be able to work together effectively, without conflicts and other disturbances, it is essential that they respect and appreciate one another. A teacher can encourage respectful behaviour among their students by setting a good example, or also talking directly to them. A study has shown that teachers who manage to prevent their students from disrupting lessons, rather than reacting to disruptions after they have already occurred, will spend up to 17,5% less of their teaching time on disciplining the class. This proves the positive influence a teacher can have on their students’ social behaviour. Furthermore, by continuously pointing out positive social behaviour witnessed among one’s students, they will likely be more motivated to continue treating each other well. The ability to further positive social behaviour amongst one’s students can be vital when preparing them to include and – if necessary – later on continuously fostering the inclusion of a disabled child in, as well as outside, of the classroom. (Brown, 1967; Eichhorn, 2013) I will investigate my participants’ teachers’ commitment and success in fully integrating their disabled students among their non-disabled peers.
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2.3.5.2. The importance of a good student-teacher relationship
Besides promoting a tolerant and inclusive classroom environment that will hopefully encourage non-disabled students to treat their disabled peers as equal schoolmates and friends, there are many things teachers themselves should consider when working with a student group that includes a cerebral palsied child.
[T]he child with cerebral palsy often needs special consideration. That is, seating arrangement, classroom duties, and other such matters should be geared to [their] condition. This is not to say that tasks should be made easy for the child. Many cerebral palsied children can make great gains in function if they work to their maximum potential. (Brown, 1967, p. 385)
It is important for the teacher, and even more so the disabled child’s assistant, to know as much as possible of their student’s condition, meaning the exact kind of disability they have got, and what factors relevant to school accompany it. We have already learnt that cerebral palsied children might have a hearing impairment, speech difficulties, learning disabilities, and behavioural problems. Furthermore, seeing impairments are common among them, and can become an issue in school, if left undiagnosed, or if teachers and assistants are left unaware of them.
Strabismus affects at least 50% of people with cerebral palsy – as opposed to 5 to 10% of the general population – and is thus the most common ophthalmic lesion among cerebral palsied people. The most common form is divergent strabismus, also called exotropia, meaning that “the visual axis of one eye deviates from that of the other”, as can be seen in the illustration below (“Exotropia,” 2007). (Hahne, 2006; Jaeger, 1982; Sperlich, 2013)
Figure 7: Divergent strabismus (“Exotropia,” 2009, fig. 1)
Strabismus is, however, not directly linked to a cerebral palsied person’s general paralysis. An accompanying hearing impairment and/or language disorder can severely complicate an ~ 39 ~ accurate diagnosis of a person’s strabismus, since they may not be able to communicate their observations effectively. (Jaeger, 1982)
In addition to this phenomenon, especially atactic and athetoid people often show nystagmus (i.e., “involuntary and jerky repetitive movement of the eyeballs” [Roper, 1981, p. 210]), while hemiplegic and tetraplegic people are often affected by hemianopia (i.e., “[b]lindness in one half of the visual field of one or both eyes” [Roper, 1981, p. 140]). Refraction anomaly (which means that light rays do not meet on the retina as they would in a non-disabled person’s eye [Roper, 1981]) can further emerge with different kinds of cerebral palsy. (Hahne, 2006) It can manifest itself as hyperopia (meaning that light rays meet behind the retina), myopia (i.e., shortsightedness, meaning that light rays meet before the retina), or astigmatism (i.e., corneal curvature, which means that light rays do not meet at all in an affected person’s eye). (“Refraktionsanomalie,” 2015, “Refraktionsanomalie,” n.d.)
It is clear that the diagnosis of any such possible conditions, as well as their professional treatment, but especially also the teacher’s and assistant’s knowledge of them, can play a crucial role in the academic success of a cerebral palsied (or really any) child. (Hahne, 2006) If the child suffers from myopia, the teacher might, for example, sit them to the front of the classroom. Seeing as all of my participants have visual impairments, I will investigate how they and their teachers have dealt or are dealing with them in the context of their English lessons.
2.3.5.3. The importance of a relaxed atmosphere
Besides considering the above mentioned impairments that might accompany cerebral palsy, teachers should also be well informed about the main difficulties it entails for a child. At first, it is advisable not to give the cerebral palsied student more than one task at once, especially if one of the tasks involves speaking. As was already mentioned, these people often struggle to perform any other action during the act of speaking, as it requires a lot of concentration and effort of them. (Kien, 2004; Moosecker & Fries, 2006) In an instance where the cerebral palsied student might be asked to speak in front of the class, the teacher should try to ensure that the non-disabled students are not getting irritated with or making fun of their disabled peer, who is taking more time and effort to speak, and cannot do so in as clear a manner as their non-disabled peers. It will be interesting to find out how my participants’ peers behaved while they were speaking, as well as whether and how possible intolerances were being overcome. ~ 40 ~
The achievement of an inclusive classroom atmosphere is important for the cerebral palsied student’s sense of belonging and general satisfaction. Kien has found that 64,9% of the cerebral palsied people she questioned on life quality perceived it to be higher the more friends they had. (2004) Being on good terms with one’s peers should mean that the cerebral palsied child feels more comfortable and at ease in their class. The more relaxed they are, the better also their academic performance will be.
Relaxation as such is a discussed issue with cerebral palsy, as the disability often induces a generally increased muscle tone, meaning that the child is somewhat tense almost at all times. Therefore, finding ways to relax them during their school day is crucial. Martinez’ physiotherapist explained to her that she worked better when relaxed and content, which, unfortunately, she rarely was in her secondary school classroom. (2014) It will be exciting to find out, how my participants felt and fared among their non-disabled classmates.
In addition to a relaxed classroom atmosphere, regular breaks are important for cerebral palsied students. (Brown, 1967) In this instance, the attained relief and thus academic improvement a successful myotenofasciotomy (explained in section 2.2.4.1.) can trigger becomes apparent. Since my brother, who is now spending a lot of his time at work behind a computer, has had this operation, he needs fewer breaks during his shift, and is less exhausted when he comes home, because his general muscle tone has decreased.
2.3.5.4. The benefits of music
Music and games are always a handy and usually successful tool for teachers to promote learner motivation. (Milani-Comparetti, 1974) However, speech impaired children in particular have shown great interest and skill in the musical department. They may not be able to follow fast-paced lyrics, but they show great pleasure in singing, are able to hit notes, and follow a melody. However, singing can not only motivate speech impaired students, it also encourages them to pronounce language more clearly, and is thus a great tool to practise pronunciation. It is vital that the teacher, and also the peers, do not discourage the cerebral palsied student’s love for music, but seize this passion to aid their linguistic competence in the areas of vocabulary, grammatical stability, and correct articulation. (Bläsig, 1982)
Music can easily be included in any language classroom, especially the English one, as modern culture is filled to the top with anglophone music. My brother has a huge passion for various kinds of music and – like me – has accumulated most of his English vocabulary through listening and singing along to it. He too cannot follow the lyrics’ pace at all times and ~ 41 ~ leaves out certain words, which does nothing to diminish his joy when singing along to English music, though. Another advantage music is said to have with some cerebral palsied people is that it calms and relaxes them, which – as has been established above – is hugely beneficial to the child’s academic success, and should therefore be taken advantage of by a language teacher by including a lot of music in their lessons. (Bläsig, 1982)
2.3.5.5. The importance of furthering oral output
Young cerebral palsied children can profit greatly from being told fairytales and other stories, as they expand and consolidate their vocabulary, and motivate them to talk and narrate themselves. Pictures should always be provided as they do not dampen the students’ imagination, but help them follow a story’s path. When the cerebral palsied child is telling a story, it is as important for their kindergarten teacher as for following teachers to refrain from talking too much, and rather focus on letting the child speak. If they show no desire to speak, the teacher should encourage them to do so by having them repeat certain lines, learn lyrics by heart, or playing role games. (Bläsig, 1982) As Martinez recounts in her book, she always wanted to speak in front of her class and any other audience, as she has got a great love for poetry and performing in general. However, during her school years, she encountered various people (peers, as well as teachers) who neither believed in her, nor showed the patience to allow for her to prove her skills and passion. (2014)
Schließlich ist es bei der geringen Zahl größerer Eindrücke und Erlebnisse ratsam, dem Tagesablauf betonte Beachtung zu schenken. Werden die Kleinen immer wieder danach gefragt, so beobachten sie aufmerksamer und nehmen intensiver das Geschehen auf. (Bläsig, 1982, p. 421)
Ultimately, considering the small number of greater impressions and experiences, it is advisable to pay enhanced attention to the daily routine. If the small ones are repeatedly asked about it, they observe more attentively and absorb events more intensely.
Giving cerebral palsied children the opportunity to speak as much as possible from an early age on, will not only train their communicative competence. It has shown to have advantages that go far beyond simply training the act of speaking itself. The child actually learns to think more about their environment, and to perceive the world around them more consciously and attentively as they try to put it into words. Roman fabulist Seneca already explained that “[w]hile we teach, we learn”. Thousands of years later, scientists have now proven that conveying one’s knowledge consolidates it in the speaker’s (or writer’s) mind, among other things also because one works harder to fully understand the respective subject matter.
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(Murphy Paul, 2011) If we then transfer this to a young child’s understanding of the world around it, it becomes clear why talking about this world might be of such importance.
Another important communication tip for teachers, as well as peers, of cerebral palsied students sitting in wheelchairs is that they should communicate with them at eye level, as looking up while talking encourages the hyperextension of their head that these children should learn to avoid while speaking. If oral communication is not possible, it can be substituted with gestures, provided, of course, the child is able to perform them in an intelligible manner, and there is accordance over the respective gestures’ meaning amongst the classroom. (Kien, 2004) It will be interesting to find out how encouraged my speech impaired participants felt to speak in their language lessons, and whether they enjoy the oral aspect of languages and English in particular.
2.3.5.6. How to tackle writing
The preferable means of writing depends on the severity of the child’s physical disability. They might be able to write intelligibly with a thick pen, or they might need a computer. In this instance, the keyboard might possess enlarged keys, or a cover plate to help prevent especially athetoid students, who are often overcome by involuntary motion sequences, from hitting several letters at once. An armrest can also help them keep their arms and hands as relaxed and in control as possible. Another possible aid my brother, who always worked with a regular keyboard, profited from were enlarged letters on each key. Seeing as he has got astigmatism, the enlargement helped him to identify each letter better. It is not imperative, however, that the cerebral palsied child will write most effectively with their hands. They may find it easier to learn how to write with their feet, or how to operate a special switch with their forehead or tongue. In any case, the right wheelchair and desk are essential to ensure and aid optimal mobility and writing ability of the disabled child. (Bläsig, 1982; “Cerebral Palsy in the Classroom,” n.d.) „Die medizinisch richtige Sitzversorgung ist Therapie! [A medically correct seating supply is therapy!]” (Schwarz, 2007, p. 28)
However, in some cases (as with Aaron and Evan) body control is impaired to a degree that makes it impossible for the cerebral palsied student to write effectively on their own at all. In this instance, they might dictate what they want to write to their assistant, who writes it down for them. Even cerebral palsied students who can write might profit from such an arrangement, as they may not be able to write quickly enough to be able to deliver a performance that stands in accordance with their intelligence during a long written exam. ~ 43 ~
Francesca Martinez, for example, was allowed to dictate her GCSE answers to a teacher or her assistant. (2014) Apart from short dictations that allow for the student to dictate each word letter by letter, which Dan occasionally accomplished, this method does not allow for a spell check, however. I have investigated my participants’ teachers’ views on whether this can be fair in regular schooling and presented them in my research findings.
2.4. Conclusion
My research has shown me that cerebral palsy is a diverse and complex disability, of which a lot is already known, but some confusion still resides as to how to categorise certain types of it, which symptoms exactly they might entail, and how they can best be treated. Cerebral palsy can manifest itself in various ways in an affected person and leave them with various degrees of disability, as well as different needs in an academic setting. Certain common traits and needs for successful language learning seem to prevail among most children affected by the disability, though, and were presented in this chapter. They include things such as the need for a relaxed and inclusive classroom atmosphere, encouragement to speak a lot, and response to the child as an individual rather than a representative of their specific disability.
We have learnt that there is a lot cerebral palsied children’s significant others can do to encourage their optimal development into adults, and their integration among society. Parents and teachers should accept their child and student as they are and shed false assumptions about future failures, as well as successes. They should know the child well enough to prevent themselves both from helping them too much, and hindering their development and optimal education, as well as overexerting the child, and asking too much of them. Non-disabled children should be encouraged early on to accept and respect their disabled peers as they are, and include them as equals, in order for the atmosphere to be positive and furthering during lessons, as well as breaks.
Although teachers can play a crucial role in creating an integrative and productive environment for cerebral palsied students to prosper in, things like concrete speech therapy should always be conducted by experts or at least proceed under professional supervision. (Brown, 1967) However, as for anyone else, the top maxim for any speech therapist or curative teacher should always be to get to know the respective child, and what their individual potential and limitations are. Cerebral palsied people can appear less competent than they actually are, due to their sometimes very strong speech impairment. A high level of
~ 44 ~ intelligence is, however, possible despite the disability, which proves that these people should under no circumstance be underestimated or even denied a good education.
As it is every teacher’s job to respond to their students’ individual strengths and weaknesses, and special education schools are soon to be a thing of the past, nothing should be standing in the way of every cerebral palsied child with sufficient intelligence soon being able to easily attend only regular schools, and grow up among their non-disabled peers. Especially the latter sections of this chapter have shown that much knowledge about how to best support cerebral palsied students exists, and has done so for many years. It seems to remain to simply be a question of trusting the respective student to follow the regular lessons, and also trusting oneself to possess the right amount of empathy to sense what the child needs and can do. This is, however, the task a teacher is facing when teaching any kind of student, be it a disabled or a non-disabled one. Every student comes with different strengths and weaknesses, and, as Martinez so poignantly wrote it, “[n]ormality is a myth.” (2014, p. 262)
The author herself has come to understand that the agony she felt over being disabled was not caused by her actual disability itself, but by society’s inability to handle it and treat her as the normally abnormal, as she would probably word it, person that she is. (2014) I am intrigued to find out through the process of my empirical research, how far Austria is today in the integration of disabled people, whether the knowledge I have gained through my theoretical research proves to be valuable and utilised in the real language classroom, and which further concrete tips and approaches my research findings might introduce to this thesis.
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3. CHAPTER 3: RESEARCH METHODOLOGY
3.1. Rationale and Purpose for the Research Study
Although a lot of literature exists on how to best integrate disabled children in general into mainstream schools, so that they can grow up as integral, equal members of society, little to no extensive literature exists on the specific question of how language education can work successfully in a mainstream school classroom that features a student with severe cerebral palsy. This study aims to contribute to the research field of including children with mild to severe motor impairments in general education and language education in particular.
In order for cerebral palsied people to become truly equal and respected parts of the society they are living in, it is essential that others do not underestimate them, and understand the reasons for specific issues they are dealing with. As research has shown, issues relevant to language learning, such as problems with listening, speaking, reading, or writing, are often not triggered by an intellectual impairment, but a motoric one. (Neuhäuser, 1982; Shafer & Moss, 1998) Through my research, I was hoping to gain a deeper understanding of all the possible characteristics of this particular disability, how they might manifest themselves, and in what ways they might affect a child’s academic performance in general education and in their language education specifically.
In order to truly get a deep insight into everything that might come into play during a language lesson with a cerebral palsied child and shape its success, it is necessary to first of all gain a thorough understanding of the disability, its various types, possible ways of treating it, and how to best handle a person affected by it as a fellow human being (that is, in this study’s context, as a teacher, assistant, parent, or peer). Secondly, it is also relevant to talk to cerebral palsied people themselves, give them the chance to present themselves, speak their minds, and let their voices be heard, in order to gain an even deeper and more authentic insight into the field.
Since a lot of prejudice prevails on these people’s ability to learn a foreign language, simply due to their speech impairment, yet, it has been proven, and I know from personal experience, how intelligent and linguistically gifted they can be, the topic of this thesis is very dear to my heart. (“Additional Needs: Teaching learners with speech, language and communication difficulties,” n.d.; Ingram, 2008; McKeown, 2004) One aim of this study is to explore the
~ 46 ~ reality for such pupils and potentially challenge existing prejudices. The following research questions were addressed:
What are the self-reported experiences of cerebral palsied students in Austrian mainstream schools in respect to general integration and language education in particular?
What are the perceptions of the significant others in the lives of these students?
3.2. Methodological Design
3.2.1. Qualitative case study
Considering the lack of extensive literature on my study’s particular focus, I did not want to merely scratch the surface and collect written data from as many cases as I could, possibly without even meeting them. I wanted the data to come from a manageable group of participants that I would get to know and talk to personally, in order to reach as deep as possible into their personal experiences. (Dresing, Pehl, & Schmieder, 2015)
O’Leary explains the difference between qualitative and quantitative data as such: While the first focuses on “words, pictures, or icons” and is analysed via thematic exploration, the latter focuses on numbers and uses statistics. (2010, pp. 104–105) As I was keen to gain as deep and personal an insight as possible into my participants’ experiences, I knew that a quantitative study would not be suitable, as it would have obligated me to focus on a much broader population, and provide generalisable findings. (Dörnyei, 2007) However, this study necessitated a research method and design frame that would allow all of my cases to describe in their own voices what they experienced, what they thought about it, why they thought that way, and how they felt they had come to adopt their individual views, in order to eventually gain a holistic view of their personal experiences. (O’Leary, 2010) Thus, I have decided on doing a qualitative case study, as it allows for a much more thorough, detailed analysis of contextualised, individual data. (Hood, 2009; D. M. Johnson, 1992)
Investigating the school and language learning experiences of cerebral palsied people, including both positive and negative examples, provides us with deeper insights into what these people might need in order to thrive academically and gain as high a language proficiency as possible. These insights are complex and influenced not only by the investigated students, but a large number of other people, such as their parents, teachers, assistants, and peers. While such findings can contain a notable amount of subjectivity, both
~ 47 ~ from the participants’ sides as that of the researcher, and lack generalisability, qualitative research appreciates this characteristic and also does not shy away from political agendas, which was essential to me when choosing an appropriate research method, considering my own bias and the desired positive message I wanted my thesis to convey. (O’Leary, 2010)
In order to give credibility to my study despite the above mentioned limitations of its chosen research method and design frame, I made sure to collect saturated and crystallised data. This means that studying further participants would not have seemed to bring any new insights to the study, considering the reoccurring similarities between most of my participants, and the richness in data they already provided. In order to offer a crystallised view on each case, I did not only interview the former and current students themselves, but as many people from their immediate environment as possible. (O’Leary, 2010) In order to keep my personal standpoint under control, I separated the presentation of my findings from their discussion, so that my own bias would not interfere with my findings and taint them. Seeing as mostly only chapter 5, and in parts also chapter 2, of this thesis are now informed by my personal experiences and views, I do not consider them as a weakness of my study, but rather have chosen to also use my ‘insider’ perspective to help me be sensitive to issues during data collection and analysis, and further enrich my thesis with additional empirical evidence. (Fahie, 2015; Hood, 2009)
3.2.2. Overall Research Design
The following chart illustrates the processes of empirical research conducted in this study.
First Phase of Data • Conducting unstructured observations in a candid Collection: fashion as a non-participant
Observation Data • Collecting qualitative verbal and non-verbal data
• Conducting extensive, informal, structured, one-on-one interviews with former students Second Phase of Data • Conducting short, informal, semi-structured one-on- Collection: one interviews with some of my participants’ teachers, assistants, and parents Interview Data • Conducting short, informal, semi-structured, multiple interviews with some of my participants’ parents
• Conducting short, informal, semi-structured, one-on-
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one interviews with current students • Collecting qualitative verbal and non-verbal data
• Transcribing interview data, transforming observation data into narratives Coding and • Manual coding and analysis of interview and Analysis of Data observation data • Detection of possible differences and similarities
Table 1: Research design (Adapted from Fink, 2013, p. 51)
3.3. Research Context
3.3.1. Participants and context
This study is based on the interviews and observations of seven voluntary former and current students with different kinds and degrees of cerebral palsy, as well as some of their teachers, assistants, and parents. Most of the people mentioned in this thesis have been given pseudonyms selected at random alphabetically. The following chart provides a short overview of my seven cases and their personal information relevant to this study.
Average English Main participant & Participant’s grade according to Type & degree of
further people constituting gender/age participant & disability the case teacher(s)
• Aaron male/25 Very Good athetosis with spasticity Case 1 • his parents (English is Aaron’s • his former teacher second mother 100% disabled Mrs Miller tongue)
• Ben male/21 Good spastic tetraplegia • his parents 100% disabled Case 2 • his former teachers Mrs Bricks and Mrs Burns
• Chris male/20 Very Good spastic diplegia Case 3 • his mother with hypotonia • his former teacher 100% disabled
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Mrs Adams
• Dan male/17 Very Good spastic tetraplegia • his parents 100% disabled Case 4 • his former teacher Mrs Smith • his former assistant Julia
• Evan male/22 Very Good spastic tetraplegia Case 5 • his mother 100% disabled • his former teacher Mr Friend
• Fiona female/13 Good spastic hemiplegia • her teacher Mrs 60% disabled Johnson Case 6 • her special education teacher and assistant Mrs Kind
• Greg male/10 Very Good spastic diplegia • his mother with hypotonia Case 7 • his teacher Mr 70% disabled Twist • his assistant Anna
Table 2: My Participants
Although I contacted every Austrian regular school I could reach by car, the search for current students left me with only two participants (i.e., Fiona and Greg). Therefore, it was essential for the success of my project that I contact some of the former cerebral palsied students of mainstream schools I personally know. This left me with three further participants (i.e., Aaron, Chris, and Evan), who put me into contact with my final two participants (i.e., Ben and Dan). Fortunately, these seven participants and also some of their educators were immediately interested in my project and willing to take part in it.
Although interviewing people one knows can have certain disadvantages, as they might, for example, omit information due to the lack of anonymity in front of their interviewer, I believe it to have been beneficial to my research, as my participants seem to have felt comfortable in my presence, and trusted me enough to confide in me on a very personal basis, which gave
~ 50 ~ this qualitative study a lot more depth and richness. Furthermore, researching potentially sensitive subjects, such as disability and social integration, can pose significant challenges and lead to emotional turmoil in one’s interviewees, which I believe I was able to avoid due to my previous knowledge of some of them and my generally vast experience with people with all kinds of disabilities. (Fahie, 2015)
I have chosen my cases for their linguistic characteristics (English is their first foreign language or even second mother tongue, and they all did or do well in it), their institutional (they all attended or are still attending an Austrian regular primary or secondary school), their psychological (they are disabled students who were integrated into mainstream education rather than assigned to a special school), and their sociocultural characteristics (they were speech and motor impaired students in mainstream language classrooms). (Hood, 2009)
As can be seen in the above table, all of my participants received and receive top grades in English, which shows that they were and are not overexerted by the demands of mainstream education and their specific curriculums. Furthermore, interviewing mostly graduates, as opposed to current students, meant that I was able to see whether their school education had been successful or not, as it had already been completed, so I was able to explore what might have contributed to this. Also, these participants have had enough time to reflect on this period in their lives and what factors might have been crucial in defining it.
In order to ensure that all of my participants were as relaxed as possible, and felt secure and comfortable in their environment, I visited some of them in their own homes and invited others to my place, always leaving the decision of where the interview would take place up to them. The interviews were then conducted in a quiet room, with only my interview partners and myself present. During my observations in class, I also tried to avoid making my participants nervous with my presence. I believe, I managed to do so by sitting myself quietly into a corner as a non-participant during and also prior to the recording, so that the students would become accustomed to my presence. In addition, the camera was placed on a back shelf to make it as unobtrusive as possible. During my observations, I did not witness anyone of them scanning the class looking for the camera, which I interpret as a good sign.
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3.3.2. Ethics
3.3.2.1. The confidentiality of my participants’ personal information
It was of great importance to me that my participants’ anonymity would be protected, wherefore I did not include my brother in the research process and revealed as few personal details as needed about my participants, as their anonymity was already endangered due to the disclosure of their personal relationship to me. Before any of my interviews or observations, all of my participants were immediately made aware of the fact that they would remain anonymous throughout my thesis and only my main participants’ gender, age, disability, and the nature of my personal relationship to them would be disclosed. I further explained to them that they would be given pseudonyms throughout my thesis, which they all agreed with. Seeing as audio and video recordings also threaten a participant’s anonymity, I assured my interviewees and all of the children and teachers recorded on camera that these recordings would never be heard or seen by anyone apart from myself, and be destroyed as soon as my thesis was finished. (Dörnyei, 2007) When I wanted to send out declarations of consent for each parent to sign before my lesson observations, both teachers assured me that they would talk to their students’ parents, who all agreed to let me observe and record their children with the promise that the material would be confidential, anonymous, not shown to third parties, and soon destroyed.
From the start, I was very candid with all of my participants and told them everything they wanted to know about my project and reason for it; apart from disclosing any desired outcome, of course, as this might have distorted my findings. (Dresing et al., 2015; O’Leary, 2010) Being so open also allowed me to address potentially difficult subjects with them, such as my desire to analyse them personally and potentially be critical of them. With the assurance that everything would remain anonymous, they were kind enough to give me full freedom with my collected data to write honestly without shying away from reporting something I felt needed including. Knowing that my participants will certainly recognise themselves upon reading this thesis, I trust that they will be content with my honest representation of their experiences, and I respect them greatly for the freedom they have given me with their very personal stories.
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3.3.2.2. Disability Studies
Any study dealing with personal and private matters and opinions of real people must consider ethical issues. Since this is a thesis studying the lives and experiences of disabled people, I believe this section to be of particular importance, as it is easy to inadvertently cause offence. I have personally come to believe that a refusal to name certain things as they are can often stem from one’s rejection of them, and that people who speak openly about their strengths and weaknesses have come to accept both, and are at peace with the latter as much as the first. A disabled child’s father wrote to the magazine Disability Now:
Have we become over sensitive and so politically correct that people no longer know how to address those of us who are disabled in one way or another? I admit that I am happier to associate my son with the term ‘Down’s syndrome than mongoloid but should I feel upset because I am referred to as a diabetic rather than a person with diabetes – of course not! We should be concentrating on the things that really change lives, like understanding, acceptance, tolerance and social inclusion. Unless people are being intentionally unkind in their choice of words we should be relaxed about it. (Disability Sheffield, 2013, p. 2)
In general, I have witnessed a growing trend of people taking offence. However, I believe that words as such are simply words. They gain negative connotations. It seems to me that terms such as disabled have developed a negative connotation, which makes them feel uncomfortable and judgmental. Replacing the term with a new and fresh one then removes all the negative connotations, but only for a while. This process seems to have spiralled out of control in recent years, so that even disabled people themselves are sometimes uncertain of which terminology to use when referring to themselves, and may be unhappy with being forced to use certain terms they do not associate with. (Atkinson, 2015; Disability Sheffield, 2013; Rothman, 2013) Some of my main participants have used terms that are deemed highly politically incorrect nowadays, such as the description of non-disabled people as “healthy” and even “normal”, showing that they do not mind such terms or feel discriminated by them.
Whilst writing this thesis, I have mostly used terms as it is suggested they be used in the literature, apart from avoiding people first language, as I felt it would have unnecessarily prolonged and complicated my sentences to always write “person with a disability” instead of “disabled person”. I do not put any emotional value on words, and believe that differentiating between “person who has cerebral palsy” and “cerebral palsied person”, or “deaf” and “the deaf”, and condemning the latter in both cases to be exaggerated and a hindrance to integration and equality, as non-disabled people are likely to shy away from interacting with
~ 53 ~ disabled people, if they fear that they might use a term currently deemed politically incorrect. (Disability and Communication Access Board, 2008; Disability Sheffield, 2013)
Lastly, I have to stress that I do not wish to reduce anyone of my participants to their disabilities by repeatedly using labels such as impaired, cerebral palsied, disabled, and similar terms. Having grown up among people with different kinds of disabilities, I am perfectly aware of all of my friends’ and acquaintances’ competences and qualities as human beings. This is, however, a study investigating the experiences of people with cerebral palsy, wherefore this characteristic, which does not define any of my participants, but is nonetheless an integral part of the respective individuals they are, will receive special attention.
3.4. Methods of Data Collection
3.4.1. Procedure
In late March of 2015, I started researching for mainstream schools that had cerebral palsied students, contacting headmasters all over Austria. I emailed and phoned all of the primary and all forms of secondary schools within a 200 kilometre radius of where I live, as well as most grammar schools (Ger.: Gymnasium) around the country, and was eventually left with 4 possible candidates. Unfortunately, two of them did not work out due to the parents refusing to let me observe their child in one instance, and the teacher declining my visit to her lessons in another. The two students I was allowed to work with were Fiona and Greg, a secondary and a primary school student, whose educators allowed me to observe five English lessons with the first and three with the latter.
Wanting to pose as little a disturbance as possible in the everyday school routine of my participants, I again complied with them and their teachers and assistants wherever I could, letting them chose the dates and times of my visits, as well as when and where I would interview them, which was mostly during lesson breaks and took around 12 minutes on average. I interviewed my main participants before questioning their significant others, as I wanted to go into these conversations with as much of an open mind as possible, and not let my perceptions be shaped by what other people had already told me about the respective student. The observations and interviews took place in early December of 2015 for Fiona and late January of 2016 for Greg. All observations used in this study were recorded on camera and later transformed into narratives, an extract of which can be found in the appendices.
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Aware of the fact that the planning, conducting, transcribing, and analysing of qualitative interviews would be very time-consuming, I was eager to start the extensive conversations with my further five participants and their educators as early as possible. (Dresing et al., 2015) However, a lot of planning around many different timetables proved quite a challenge, until all of my interviews’ dates were finally settled. Between early January and mid March of 2016, I then conducted structured interviews with my five main participants, which lasted between 1.02 and 2.36 hours, and semi-structured interviews with most of their parents, English teachers, and assistants, which lasted between 7 and 43 minutes. Again, I first interviewed my main participants and then their significant others. Detailed frames of all of my interviews can be found in the table below.
Date of interview Duration of interview Interviewee(s) (day, month, year) (in hours and minutes) Aaron 05.01.2016 01:08 Aaron’s parents 05.01.2016 00:11 Mrs Miller 10.01.2016 00:07 Ben 12.03.2016 01:02 Ben’s parents 12.03.2016 00:14 Mrs Bricks 12.03.2016 00:12 Mrs Burns 12.03.2016 00:16 Chris 13.02.2016 01:42 Chris’ mother 13.02.2016 00:12 Mrs Adams 24.02.2016 00:18 Dan 14.02.2016 01:04 Dan’s parents 14.02.2016 00:15 Mrs Smith 21.03.2016 00:13 Julia 17.02.2016 00:11 Evan 28.02.2016 02:36 Evan’s mother 28.02.2016 00:07 Mr Friend 01.03.2016 00:43 Fiona 10.12.2015 00:17 Mrs Johnson 10.12.2015 00:14 Mrs Kind 10.12.2015 00:10
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Greg 26.01.2016 00:12 Greg’s mother 26.01.2016 00:08 Mr Twist 26.01.2016 00:13 Anna 26.01.2016 00:09
Table 3: Interview frames
3.4.2. Interview data
One of this thesis’ main ambitions has always been to support disabled people and empower them by giving their experiences voice. Therefore, I did not want to merely study them as a subject but let their own voices be heard, and thus my paper be heavily influenced by their own opinions and viewpoints. It was soon decided that extensive one-on-one interviews would be most fitting for this endeavour. Given my personal standing and strong emotional attachment to my study’s topic, I further felt that interviews would allow me to detach my own perceptions more so than observations, for example, and focus purely on what my participants told me. This meant that I had to control myself, not trying to steer my interviews in any desired directions, but allowing for their results to be whatever they would turn into. (Dresing et al., 2015) The “’Art of Listening’” is generally not an easy task for inexperienced interviewers, such as myself, as they can easily be tempted to talk too much. (O’Leary, 2010, p. 194) Additionally, my main participants struggle with speaking and often took a long time to finish their sentences. In these instances, it was of utmost importance to hold myself back, resist the urge to ‘help’ them by finishing their sentences, and show them that I am interested and patient enough to wait for them to tell me everything they would like to say. (Dresing et al., 2015) I believe my experience and subsequent ease with disabled people to have helped me in this regard.
Knowing that the basis for an interview’s general atmosphere is formed upon the first contact between interviewer and interviewee, I tried to appear as unintimidating, friendly, and casual as possible upon meeting the participants I had not known prior to my study. This also allowed for me to ensure that the rapport between them and me would be casual, relaxed, and comfortable, so that they would hopefully feel free to talk to me openly and frankly about their personal lives. (Dresing et al., 2015) In this regard, more so than any other, I believe my personal rapport to some of my participants to have been hugely beneficial to the depth and frankness of my findings, as there was already a level of trust and ease with each other, which furthered and encouraged my interviewees’ narrations. It must also be mentioned, however, ~ 56 ~ that I made it very clear to my participants prior to our interviews that they would not have to answer any questions they felt uncomfortable with, and could simply decline to comment at any point throughout our conversations without needing to justify themselves. Luckily, however, every participant readily answered each of my prepared questions, and there seemed to be no issues with how they affected them emotionally.
The interviews I conducted with my main participants, as well as their former teachers and assistants, were one-on-one interviews. Although this meant that they would be more time- consuming, I wanted to make sure that especially my main participants, the former students, would not be interrupted by anyone, and also feel secure enough to mention whatever they deemed relevant and be as truthful as they desired. The truthfulness of their utterances might have been jeopardised in the presence of their parents or former teachers, which would undoubtedly have distorted my findings. (O’Leary, 2010) The only interviews not conducted one-on-one were some I did with parent couples who felt comfortable enough to conduct them together.
Although my interviews with the former students were structured, which I chose in order to ensure everything I wanted to cover would be addressed by them, I conducted them in an informal manner to further aid a relaxed and casual atmosphere, allowed for there to also be jokes in between questions, and for my participants to wander off if they felt the desire or need to tell me something I had not intended on asking them. After such incidents, I would simply continue the interview as planned and ask the next prepared question. Often, I was also able to leave out some questions, as they had already been addressed by the interviewees. The interviews I conducted with the former students’ educators were semi-structured and fewer questions were formulated, as I had already anticipated them to elaborate more freely and need less impulse, but also informal as I also knew some of them, and further wanted to keep a relaxed and unforced atmosphere. (O’Leary, 2010)
As I have described in section 3.2.1., I have chosen to do a qualitative study, because I wanted to really get to the bottom of my participants’ school experiences and find out what they experienced from multiple perspectives. Doing a questionnaire survey simply would not have aided my desire in this regard, as my participants would not have been encouraged to give the extensive answers I was able to elicit from them during our long conversations. Narratives, journals, or diaries were no options either, as all of my main participants struggle with writing. I did not want to ask their educators to write their thoughts and memories down for
~ 57 ~ me either, as it would have been a lot more time-consuming for them than interviews, and they would also have had the chance to properly think about what they were conveying and how they would present themselves, which could have distorted my results as opposed to interviews, which encourage spontaneous and thus more authentic answers. Furthermore, the above mentioned tools only allow for purely verbal data. However, people often omit the full truth in order to “impress, be liked, or maintain privacy”. (O’Leary, 2010, p. 197) While, interviews do not prevent this, they do offer non-verbal data as well, which can give important clues as to how things are meant and how truthful they might be. (O’Leary, 2010)
Seeing as I did not repay any of my participants for their time and help as such, and only gave them small presents including food, drinks, and flowers, I wanted to make our conversations as convenient and unproblematic for them as possible. This also meant that I let them chose the language they wanted to conduct the interviews in. All of my participants’ English teachers and even some of their parents felt competent enough to use their second language (i.e., English), while some parents, my participants’ assistants, and most of my participants themselves felt freer to express all of their thoughts in their mother tongue (i.e., German), and used English only occasionally for short utterances. Evan was the only one of them to use English exclusively.
3.4.3. Observation data
As memories change over time, it was thought that relying on former students’ recounts alone would weaken the reliability of my findings. (Yu, 2010) Therefore, I was eager to include current students in my study as well, in order to examine the current situation and add contemporary, ongoing perspectives to the retrospective accounts. Additionally, I wanted to seize the opportunity to get a direct look on integrative language teaching with cerebral palsied students and experiences in the classroom, so that I would not have to solely rely on what my participants tell me for gaining an impression of classroom life. Thus, I chose to do interviews once more and further added observations as a tool for collecting indirect data, which allowed me to not only collect verbal and non-verbal data, but truly take in the environment I was studying with all of my senses. (O’Leary, 2010)
As was illustrated in section 3.4.1., arranging lesson observations among fairly young pupils can prove to be a big challenge, especially if they are to be recorded on camera, as numerous people have to give their consent to being or have their children be observed, studied, and filmed. (Heath, Hindmarsh, & Luff, 2010) Luckily, in Fiona’s and Greg’s cases, they ~ 58 ~ themselves, as well as their principals, teachers, parents, and peers agreed to my observations and recordings, and were very supportive of my project and trusting in my confidential handling of the collected data.
I was aware that how passionately invested I am in my topic would endanger my observations and possibly shape my perceptions. (O’Leary, 2010) Nonetheless, or all the more because of this, I did not prepare a protocol, as I feared that it would only lead me to focus on the things I would be expecting and oversee certain little details. Therefore, I sat quietly in a corner and tried my best to observe the lessons in an unstructured manner, with as open a mind as possible, and without expectations of what might or should happen in them. I further tried to increase my objective viewing and subsequent presentation of these lessons by recording them and transforming them into narratives, which forced me to note each situation that occurred during the lesson and include all data equally in my findings without unconsciously discriminating certain details.
Furthermore, it must be taken into consideration that observations, just as interviews, also allow for deceit and embellishment from the side of the observed. It cannot be denied that both the teachers and the students might have acted differently due to my presence and their knowledge of being filmed. Conducting covert observations was, however, not an option, due to ethical reasons. (O’Leary, 2010) Although a researcher can never be one hundred percent certain about the truthfulness of such data, there are certain things they can do to encourage authentic material and ensure its truthfulness. As was mentioned in section 3.3.1., I tried to encourage the class to behave as naturally and authentically as possible and get accustomed to my presence by sitting in on some of their lessons prior to recording the data used for this study. Additionally, while the class was empty, I placed the camera discreetly in a back shelf, where I do not believe it to have been noticed by any student. I then sat quietly in the back of the classroom as a non-participant, where students could not directly see me as they were mostly looking towards the front, and thus also were not influenced by possible physical reactions I showed towards their behaviour. This worked well, as the class seemed to quickly forget about me and never looked over to me during the lessons. (O’Leary, 2010)
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3.5. Process of Data Analysis
3.5.1. Digitalisation and transformation into written data
I did not take any notes during my interviews and observations so that I could focus purely on my participants, have better eye-contact with my interview partners, making them feel more comfortable and appreciated in my presence, and not miss little details during my observations. Therefore, I knew that the quality and suitability of my recording devices was of utmost importance. While my observations were recorded on a Sony DCR-HC23 miniDV Camcorder, all of my interviews were recorded with a Zoom H2 Digital Handy Recorder that featured automatic level control, which adjusted my interviewees’ voices, as well as my own, and aided the conversations’ intelligibility during my later transcriptions. (Dresing et al., 2015) The interviews were then saved as audio files on my laptop and transcribed, with the letter I always standing for the interviewer (i.e., myself) and acronyms, such as A (i.e., Aaron), AM, AF (i.e., Aaron’s mother, Aaron’s father), and AT (i.e., Aaron’s teacher), marking my interviewees. Names of places, institutions, and other people mentioned by my interview partners were replaced by pseudonyms to protect their and my participants’ anonymity.
Leaving out – or including, or transforming – certain aspects of recorded speech may radically change the content a transcript conveys to its readers (especially if they do not have the chance to listen to the recording, or if they have not been present in the recording situation). (Dresing et al., 2015, pp. 22–23)
I did not include prosodic elements, such as intonation and speed, in my transcriptions, as I did not believe them to offer any further semantic value to them, considering the fact that my main participants struggle with things such as the aforementioned, and therefore often use an intonation or speed that does not necessarily reflect their standpoint towards what they are saying but is a mere result of their motor impairment. I did, however, include giggles and laughs, as they often convey a lot of meaning that words alone fail to transmit. Although it is not advised, I further included incomplete and incorrect words, as well as repetitions, as they did prove to offer some valuable insights into my participants’ language competences and skills, such as Evan’s ability to exchange words he struggles to pronounce with synonyms, an example of which can be seen in his interview extract in appendix C. (Dresing et al., 2015) Passages I did not understand at all were marked with (( )), while words I was not certain I understood correctly were bracketed in the same way. Pauses were labelled with (...), and language mistakes with *. ~ 60 ~
My visual material was transformed into narratives directly from the camera, which worked smoothly and generated a large amount of detailed written material, of which a short extract can be found in appendix D. (Again, each singular capital letter stands for one of the people more closely described in section 4.7., while the labels S1 to S9 designate Fiona’s peers that were not mentioned in my findings chapter and thus not given a pseudonym.) This step was necessary, in order for me to be able to code my observation data as well, and also keep it in written form after I have deleted the visual recording as promised to my participants. I have not transcribed long direct quotes, but converted most of what was said into reported speech.
3.5.2. Coding and analysis of data
After transcribing all of my interviews and transforming my observations into narratives, it was time to decide on the best way of coding them for later analysis. Coding is imperative in order to transform any kind of raw data, whether it be qualitative or quantitative, into meaningful units that can be categorised and analysed, and further discern patterns of similarity and difference. (O’Leary, 2010; Punch, 2009) Although data management software nowadays aids this process, its mandatory necessity for projects such as this one is debatable. (O’Leary, 2010) I have decided to code my data manually, although I knew that it would be accompanied by an enormous amount of work. As this is my first empirical study, I wanted to get a proper feeling of what it meant to code, organise, and analyse a large amount of data, and how such a process can work. (Saldaña, 2016) I wanted to get a “cognitive understanding and ownership” of the process of data analysis and its outcome. (Saldaña, 2016, p. 28) Although Saldaña advises against applying manual coding for larger projects, he does recommend it for first-time studies, and further argues that the choice of whether to use manual or electronic coding is also dependent on the time available to the researcher and their inclination. I worked on a strict schedule, and knew that I could succeed in my endeavour by means of discipline and a well thought through organisation structure. Also, it must not be forgotten that computer-assisted qualitative data analysis software (CAQDAS) has its own shortcomings too, and may lack substance and complexity. (2016) Saldaña advises researchers to “’[t]ouch the data. ... Handling the data gets additional data out of memory and into the record. It turns abstract information into concrete data’”. (2016, p. 30)
A purely bottom-up approach of coding was deemed unsuitable, especially considering the choice of manual coding, as it would have generated too much and imprecise material. A certain distinction between relevant and irrelevant data had to be made. I trusted my
~ 61 ~ understanding of my study’s topic to enable me to determine the most relevant and necessary codes, read through my transcripts and narratives, and decided on my main codes and sub- codes, which can partly be seen in appendix E. This means that, as most social researchers, I have applied a mixture of a top-down and a bottom-up approach, but leaned more towards the first. Although deductive coding can potentially blind a researcher to certain data, as they look for specific things and not each single word in particular, I have found it to be the right approach for my data analysis, as I am very intimate with this thesis’ topic and believe that I was thus able to evaluate which codes would be essential, lucrative, and most relevant to this study’s focus. (Trochim, 2006)
In a first perusal of the hard-copy printouts of my transcripts and narratives, which featured a 5,08 cm margin on each side, I applied as many codes as were thought suitable. Main codes were marked by sticky notes, while the first layer of sub-codes was marked with highlighters, and further sub-codes were marked with multicoloured pens. Then, I read through the data a second time and further applied more of the same codes. Upon a third inspection, it was decided that coding had been applied to saturation, and the process of coding was terminated. In order to better manage my extensive amount of data and keep an overview, every individual case’s collection of transcripts and narratives was worked through separately in the order they are presented in chapter 4, before bringing them together in the following chapter. After each case’s data had been coded, all of the applied codes were written on a separate paper, and the relevant passages in the data were assigned to the respective codes. Although Saldaña then recommends transferring the codes onto the electronic file, this was not deemed necessary, as it was managed to maintain a clear overview over the data. (2016)
In a final step, I attempted to create a holistic picture of my individual participants’ school experiences. Chapter 4 features a comprehensive presentation of my main participants’ thoughts on and experiences with inclusive language teaching and how it influenced them as people, as well as the thoughts and experiences of their significant others. Although it can be argued that a less emotionally invested researcher may have approached the coding and analysis of their data differently, and might thus have found different things, I trust my chosen method to have been the right one for this present study, as it gave the researcher a much more intimate understanding of their findings, and was nonetheless conducted in a professional and well organised manner that respected the pre-established codes and analysed the data accordingly.
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3.6. The Study’s Limitations
All research studies have certain limitations accompanying the specific research methods, and participants chosen, and possibly even the researcher themselves.
3.6.1. Qualitative research
As was mentioned in section 3.2.1., qualitative research is not suitable for providing generalisable findings. (Dörnyei, 2007) This study focussed on the experiences of only seven cases, wherefore the researcher cannot assume their findings to represent the majority of cases where students with cerebral palsy are included in mainstream schools. It was, however, my aim to gain a deeper insight into the experiences and feelings of my participants, wherefore a qualitative study was eventually deemed most suitable, as it allowed me to present much more in-depth data, and provide the reader of this thesis with a much deeper understanding of how my participants feel and have felt during and after their school experiences. Thus, I am hoping that this study can function as a small contribution to future research in the field, and that other researchers might deduce and transfer some details onto more quantitative studies.
3.6.2. Interviews and observations
As was mentioned, I chose interviews as my main method of data collection, because I wanted to give my participants the possibility to share every aspect of their individual school experiences and tell me as much as they wanted. However, I had to take into account that I did not personally see or experience anything my interview partners told me about, and thus had to rely on their self-report data. Many factors can have influenced the truthfulness of this data. Firstly, one person’s reality is never entirely identical to that of another person. Secondly, I know most of my participants personally, which may have influenced the truthfulness of the information they were willing to share with me during their interviews, as they knew that at least in front of me they were everything but anonymous and that we would be seeing each other again after our interviews. I noticed problems with this ‘impression management’ during my first interview with Aaron, in which he first tried to make his school career appear more pleasant to me than it later turned out to have been.
In order to possibly overcome the first issue and ensure that I would attain as honest and authentic a picture of my participants’ school careers as possible, I did not only interview the former and current students themselves, but also included some of their significant others in my study, which allowed me to gain a more holistic picture of each case. However, it again ~ 63 ~ posed certain challenges, as I had already been presented with a certain picture of the respective teachers, assistants, and parents by the time I interviewed them, and had to remind myself to approach each conversation with an open mind and let every new interview partner present their own side of the story, without my supposed pre-knowledge influencing my perception of them and their utterances. (O’Leary, 2010)
Fahie talks about “the fundamental moral principle that researchers must always endeavour ‘to act from our hearts and minds, acknowledge our interpersonal bond to others and take responsibility for actions and their consequences’”. (2015) Although the nature of my relationship to some of my participants could have lead to a distortion of my findings, I believe it to have been an advantage in respect to their truthfulness, as I am fostering a good, trusting relationship with the participants I know, which was essential to their willingness to talk to me about personal and private things. (O’Leary, 2010) Fahie further explains that “investigating topics which are considered sensitive can pose considerable challenges for all researchers, particularly inexperienced ones”, which again shows how my ‘insider’ status and closeness to both the study’s topic and its participants might have assisted me. (2015)
The indirect data collection method of observation was used to help me gain a personal and contemporary insight. Naturally, it is possible that the students I watched acted differently due to my presence. Furthermore, the method of observation does not allow me to gain insight into the observed people’s minds, and their thoughts cannot be transmitted to me in the same way as during an intimate interview. (O’Leary, 2010) In an attempt to work against these downsides, I sat quietly at the back of the class, clarified certain things with the teachers, asking them whether their students always behaved in the way I experienced it during my observations or whether it might have been due to my presence, and also conducted short interviews with the participants I observed, as well as their teachers, assistants, and one parent. I was pleased with the responses, which suggested that the students behaved in the same way they normally would.
3.6.3. Subjectivity
As was mentioned before, my personal standing towards this thesis’ topic and my strong views on the integration of disabled people in general cannot be denied and surely come through in this thesis on various places. I did enter this project with a desired outcome in mind, which was to prove that cerebral palsied students can thrive in mainstream education. A more detached researcher, who might not have grown up among disabled people, and possibly ~ 64 ~ gone into this project with a more open mind and without any political agenda, would possibly have operated in a different fashion, and might have had certain advantages in the process of data collection and analysis.
However, Fahie explains that “autobiographical vignettes, in particular, can be employed effectively to highlight commonalities/similarities (with)in people's lives. By so doing, the universality of the experience is revealed.” (2015) While too much personal involvement of the researcher can distort findings, I have done my best in detaching myself as much as possible from the processes of data collection and presentation, and make my personal involvement very clear throughout, whenever my own views emerged. As Hood mentions, a researcher choosing to do a case study does not believe that objectivity and neutrality is always desired or even possible. (Hood, 2009) Although I have tried to maintain as subjective a stance as possible, it is clear, and hopefully understandable, that I will never be objective about this topic, which, however, I see as a strength of this thesis, as it fills the spaces between my theoretical and empirical research with a passion that readers will hopefully be able to connect to.
Although the first interview I conducted did not yield the positive experiences I had anticipated and hoped for, I continued as planned with the process of data collection, and did not change my questions or any aspect of my project in order to possibly steer it in a more positive direction. I can assure the reader of this thesis that no relevant data was withheld, and every aspect of my participants’ school experiences, whether it be positive or negative, was presented to my reader as it was previously presented to me in the course of my interviews and observations, which were both analysed under strict adherence to my pre-established codes, before I presented them as objectively as possible in my findings, and finally discussed them with a stronger personal involvement that was always attempted to make clearly recognisable in the following chapter.
3.7. Summary
This study aims to investigate how successful language learning can take place in a mainstream English classroom from the perspective of cerebral palsied students. In order to examine this topic, I have conducted different types of interviews and some observations with students, teachers, parents, and assistants. All of the primary data was later transformed into written data, coded, and analysed.
~ 65 ~
4. CHAPTER 4: RESEARCH FINDINGS
4.1. Introduction
In searching for potential participants for this study, I have personally contacted the majority of Austrian secondary schools, as well as many primary schools, around the country and can report that there appears to only have been a small number of disabled children attending mainstream schools. It is claimed that the Styrian rate for including disabled people in regular schools is 85%. (Mittelstaedt, 2014) While I am aware of the fact that the term disability includes any functional limitation, and as such also things like tunnel vision or a 75% loss of hearing, I also know that cerebral palsy is the most common physical disability in children and affects 1 to 3 out of 1000 children in Europe, and a maximum of 50 to 80 out of 1000 premature births with infants weighing less than 1.5kg. (“Cerebral Palsy,” n.d.-a, “Coping With Disabilities,” n.d.; Kien, 2004; Neuhäuser, 2006) If one assumes that all cerebral palsied children are already given the chance to at least fulfil their nine years of compulsory education in regular schools, this would lead to a minimum of 542 cases of cerebral palsy between the years of 2001 and 2007, which saw 542,000 live births in Austria, now at an age where they would receive language education at school. (“Frühgeborene seit 1984,” 2015) It must also be mentioned, however, that several schools did not reply at all, while others declined to help me with the excuse of standing under professional privacy.
At present, Erwin Buchinger, Austria’s Federal Disability Ombudsman and member of the social-democratic party (SPÖ), has demanded the legal right for disabled people to be included in the upper stages of regular secondary school. At the moment, they only have the right to be included in compulsory education. (Mittelstaedt, 2014) This chapter will show what I have come to find out about the current state of integration in Austrian schools. It will present all of the findings of my empirical research that I deemed relevant to the topic of including cerebral palsied students in regular education, and language education in particular. I will introduce each of my cases individually, before comparing them in the following chapter and aiming to draw certain conclusions that might offer possible assertions on how successful language learning might work best with cerebral palsied children and young adults.
~ 66 ~
4.2. Aaron
4.2.1. Background
The first interview I conducted was with 25-year-old Aaron, who went to an inner city school with an integrative primary school and a secondary school class for special education. This means that children from the ages of 6 to 10 are being taught together, whether they are disabled or not, and then disabled children go on to complete their compulsory education in the same building until the age of 15. Aaron, however, was allowed to stay until he was 19 years old, because his parents did not want to put him in a workshop, which is where most disabled people end up after school, and wanted him to be able to expand his education.
Aaron has got athetoid cerebral palsy with spasticity and is 100% disabled. He relies on his parents and assistants to do virtually everything for him, from feeding, bathing, and clothing him, to setting up the audio books he reads, and writing everything down for him in his work life. This means that he is classified under a care level of 7, which is the highest, granting him 180 hours of assistance per month, as explained in chapter 2.
The severity of Aaron’s cerebral palsy means that he can neither read nor write. Both result not from any intellectual deficiency, but from Aaron’s loss of control over his body due to his athetosis. He cannot use his legs effectively at all and only manages to use his hands to control his electric wheelchair. Things such as writing or even picking up an object must be done for him by somebody else. The loss of muscle control, of course, also affects Aaron’s facial musculature, including his eye muscles, making it hard for him to focus on any specific point, and speech apparatus, making it hard for him to speak, let alone speak clearly.
Nonetheless, Aaron had speech therapy only until he entered the 3rd grade of primary school, as he did not deem it necessary to further train his articulation, viewing speech therapy as a necessary measure only for people who cannot speak at all. I must admit, however, that I would certainly not have understood Aaron, had I not known him prior to our interview, as it took me some time to get used to his way of talking, when first getting to know him. There is no doubt about Aaron’s linguistic competence in English, however, as his mother is from South Africa and he was lucky enough to grow up bilingually, speaking both German and English fluently, which should have made English lessons in school fairly easy and enjoyable for Aaron. The following findings will show, whether that was the case.
~ 67 ~
4.2.2. General education
Aaron’s parents decided early on that they would want their son to grow up amongst non- disabled children, and have as normal a school experience as possible. His father recalls: “There was no question about it. I mean, of course, you never know, how it is going to work out, but we knew we had to try to integrate him and see if he can form friendships with normal children.” Aaron himself tells me that he was never nervous or scared of the prospect of going to school with non-disabled children, which is likely also linked to the fact that he was still so young at the time his primary education began. Seeing as the elementary school Aaron’s parents chose for him was already an integrative school by the time Aaron came to join it, it was no struggle at all to get him into this school, which - as will become clear from later cases - was not self-evident at all only two decades ago.
4.2.3. Relationship to peers
Aaron tells me that he already knew many of the children in his primary school from kindergarten, but met some new ones as well. He told me that he finds it very easy to form new friendships, though. Unfortunately, this is the first of many aspects, where his parents and former teacher tell me a different story. According to Aaron’s mother, he does not really have any friends, apart from his speech therapist. Aaron’s mother has spent many years inviting her son’s classmates and neighbours into her home, in the hopes that he might form friendships. Aaron, however, has shown no real interest and still prefers to be left alone in his room, rather than play or, now as an adult, simply engage with others. Aaron’s teacher, whom I will call Mrs Miller, tells me similar stories about him not finding it easy to connect with his peers. This rejection of his peers emerges a little more also from Aaron, once he is asked to describe the classroom atmosphere, which he dismissively remembers as being very crowded, loud, and ultimately dismissive of him. Although Aaron tells me he never had any disputes with his peers, his parents and Mrs Miller tell me that there was a lot of tension, especially between Aaron and some of his male peers, who continuously picked on him. Despite Aaron’s initial insistence that everything was just fine with his peers, his educators tell me that, although some of the girls in the class were a little kinder to him, nobody particularly enjoyed helping Aaron, when he needed something. When I ask him, whether his peers sometimes helped him, he suddenly becomes very aggravated and tells me that he cannot remember anymore, and later in our interview tells me how humiliating he found it that his peers, who were much younger than him, were sometimes told to help him, leaving him to
~ 68 ~ feel like a helpless child. While the classroom atmosphere was generally less hostile during Aaron’s secondary education, the class itself was still too loud for his liking, and he did not feel very comfortable in it. The general secondary class, however, is not of much relevance to this project, as Aaron continuously rejoined the 4th grade of elementary school for his English classes, in order to be able to practise his English better, as they had a native speaker as a second teacher in class.
4.2.4. Language education
As both Aaron’s primary and secondary school were in the same building, a special arrangement allowed him to continue his English classes in the 4th grade of elementary school, while sharing the rest of his lessons with his peers of the same age. The idea behind this arrangement was that Aaron, being bilingual, would profit more from the English lessons in primary school, as there was a native speaker, who he could properly talk to and exhibit his full language competence with.
Consequently, over the course of his secondary education, Aaron joined different 4th grade primary school classes of approximately 20 to 25 children for their weekly English lessons. As can be expected of primary education, Aaron tells me that music and games were a big part of these lessons. The class would often read and learn song lyrics, usually of current pop songs, and then sing them together or recite a short play. Aaron tells me that these musical and playful elements made it easier for him to remember certain phrases or even entire passages. The positive benefits of music and play on the learning success of cerebral palsied people has already been established in chapter 2 of this thesis, and was therefore a proficient technique to use by Mrs Miller.
Also, the fact that Aaron can still recite some of the things they did, further underlines the aforementioned assertion that even severely cerebral palsied people often show remarkable memory. Aaron’s mother tells me that he simply has to listen to something once and just remembers it, not needing any visual stimulus as well. “I think, because he also does not see so well, he sort of completes many things with his other senses.”, she assumes. However, Aaron was never chosen as one of the students to recite anything by Mrs Miller. She tells me that she did not want to expect too much from him or lead him to make a fool of himself.
I mean, he did volunteer every now and then to do a presentation of something, but, you know, I could see that the other kids were whispering and really bored while he was talking, and I just thought that that was very bad for the class atmosphere, so I tried to minimise it. ~ 69 ~
As Mrs Miller mentions here, Aaron did fight for his right to speak in class and volunteered to do presentations, which no other student did. As he tells me, it was, however, simply a more or less successful way for him to get his peers’ and teachers’ attention at least for a little while, without anyone interrupting him or talking over him. Aaron gets especially frustrated, when he tells me of a presentation he did merely to prove to Mrs Miller that he actually did go on a skiing holiday and was not lying to her. Although he admits that he does find it very hard to speak when he is nervous or agitated, he claims to never have been nervous during any of his presentations in class, which Mrs Miller confirms. He would, however, sometimes get very angry in his English lessons, when he wanted to say something and was repeatedly interrupted by his peers or also his teachers.
Despite Mrs Miller’s admittance that Aaron’s speech impairment was part of the reason his peers did not want to interact with him or even listen to him during lessons, no measures were met by the school to help Aaron improve his speech. The teacher tells me: “Well, there was just no time, you know. What can you do? I have my own class to teach, and I cannot do exercises with Aaron, while the rest of my class bang each other’s heads in.” In response to my question, why no professional was employed to work with Aaron, Mrs Miller tells me that the school lacked the financial means to employ a speech therapist, and it would have been his parents’ job. While those did provide Aaron with an assistant, who helped him with eating his lunch, going to the toilet, and more importantly with his school things, during all of his primary and most of his secondary education, Aaron’s assistant was not present in his English classes, as he neither got assigned any homework, nor had to complete any tests. Every once in a while there was something to do in the Exercise Book, which one of his peers was told to do for Aaron. As was mentioned before, however, Aaron found this kind of forced help humiliating, as his peers did not want to assist him, and reluctantly obeyed their teacher’s orders. Just like Aaron, his parents too remain utterly disappointed with the effort his school made in providing him with adequate foreign language education. His father agitatedly states:
I would not even say anything, if they did not know anything about disabled people, you know. But, come on! They have been an integrative school for I do not know how many years and they cannot arrange for someone like Aaron to have the right means to participate in the lessons? I mean, that is a joke!
Apart from Aaron being allowed to rejoin the final elementary class, no special arrangements were made for him and no necessary tools were provided which would have allowed him to actively participate in his English lessons. Although during his secondary education letter
~ 70 ~ boxes were used once or twice by another teacher, in order for Aaron and three further disabled classmates to write a German dictation, he never had to write anything, such as lesson notes or homework, during or for his English classes. Aaron tells me that during his English lessons he sat in the back of the classroom and mostly watched what was going on. He was initially given an old typewriter, but no further attempts were made to help him, when he could not cope with the machine.
At the start of our interview, Aaron seems completely content with the nature of his English lessons and schooling in general. English lessons were filled with lots of music and plays, which he generally enjoys a lot, and he tells me that everyone always treated him fairly and as an equal. Throughout our conversation, however, it becomes clearer that everything was not as smooth as Aaron would like to make me believe. He first tells me that he always looked forward to his English lessons and liked everything about them. He also did not feel like an outsider in the class that he shared only one lesson with, and that was always younger than him. However, the further the interview progresses, the angrier and more vocal Aaron becomes. He says more and becomes more honest, not trying to pretend as if everything had been okay during his school time, but speaking out for himself, and other disabled people and their rights. As Aaron tells me, his school never used words such as disabled or handicapped. They were very politically correct in his handling. Yet, Aaron was not really integrated successfully among his peers, and never felt treated as an equal, neither by his peers, nor his teachers. When I ask him which factors he believes are essential for a good classroom atmosphere, he interrupts me mid-question and immediately shouts „Gemeinschaft! Gemeinschaft! Gemeinschaft! [Camaraderie! Camaraderie! Camaraderie!]”, which, however, he was gravely missing during his school education.
Frankly said, Aaron’s entire school career was a disappointment for him, as well as his parents, and even now, six years after his graduation, it still makes him angry to merely think about everything that went wrong. When I ask him, whether there was any person in his school career, he likes to remember or is thankful to for their help, he shoots out a quick and loud „Gibt es keine. [There are none.]”. When I talk to his parents about his school experience, his mother laughs ironically and says “Time heals all wounds.”, while her husband looks to the floor. Having known Aaron for a long time, I know how smart he is and how much intellectual potential he has got, which, his parents feel, has gone to waste in a school that failed to cater to his needs and give him the kind of support that he needed in order to thrive. ~ 71 ~
4.2.5. Life after school
Aaron is now employed in a workshop, where he mostly listens to audio books and paints, but also conducts German and English interviews with professionals working in the disability sector. Although he is sad that his dreams of becoming a writer for the BBC did not come true, and believes that it might have been possible with better schooling, it is an occupation that fulfils him and where he can also make use of his good English. Before his interviews, Aaron likes to listen to music in order to calm his nerves, so that speaking comes easier to him. He enjoys these one-on-one conversations, as he is less frequently interrupted than in larger groups, in which I have also observed his parents interrupting him and finishing his stories in an attempt to make listening to them easier for other people. Aaron’s mother tells me that he has such pride in his interviews that he often takes certain quotes he particularly liked and includes them in his paintings. “He is really happy with the work he does now, and feels like he is doing something useful and, you know, also helping fellow disabled people in some way by doing these interviews with professionals in the field.”, she tells me. However, her son still holds a grunge with his former school, as he was always very motivated to study and learn, but never received the kind of support that would have allowed for him to rise beyond himself. Aaron explains:
Die Schulzeit ist für Menschen im Rollstuhl wichtiger. Aber wir brauchen mehr Computerprogramme, die von einer Universität entwickelt worden sind. [...] Ich habe eine Mutter interviewt, die hat einen non-verbalen Buben gehabt, und der kommuniziert jetzt über eine Website.
School time is more important for people in wheelchairs. But we need more computer programs that have been developed by a university. [...] I interviewed a mother, who had a non-verbal son, and he now communicates via a website.
When Aaron attended a seminar in London a few years ago, he learnt how to build his own website as a means of communication with other people. A mute boy, whose mother he met and interviewed, presents himself through this platform, and uses it as a mouthpiece to tell and show other people, who he is and what he likes. On his own website, Aaron uploads his interviews and photos of his drawings. Even Aaron’s mother is planning on creating a website of her own, where she gives tips to future carers. Aaron would love to see modern technology and innovative aids take off in integrative education in Austria. He was fascinated to see how much progress has already been made and how many tools are already at our disposal, which Austrian schools do not make any use of yet. „Wir werden nur in Einrichtungen gesperrt und
~ 72 ~ die Obersten glauben, sie tun uns etwas Gutes. [We are being put into institutions and authorities think they are doing us a favour.]“
4.3. Ben
4.3.1. Background
Ben is 21 years old and has visited regular schools throughout his entire school career. He went to a regular primary school, completed the first part of his secondary education in a so called Hauptschule6, and then rounded off his secondary education in an integrative Waldorf school, which he graduated from in the summer of 2015. Despite living in a suburban area, Ben always visited well-attended inner city schools with large numbers of students per class, which, he tells me with a wide grin on his face, were very lively and loud.
Ben has got spastic tetraplegia and is 100% disabled. Different to Aaron, however, he has got some control over his arms, making it possible for him to eat sliced up food and drink from a straw on his own. This means that Ben is classified under a care level of 6, granting him 180 hours of care, just like Aaron, with the difference that Ben does not rely on help with everything, but can do certain everyday tasks, like the aforementioned, on his own.
Ben has learnt to read and write, not with his hand but on any keyboard, at a fairly decent pace, which has allowed us to quickly become WhatsApp friends and write to each other frequently, with me simply having to show a little patience when waiting for Ben’s replies. The following findings will show, whether Ben’s physical and mental competences were appreciated and furthered at the schools he attended, and how actively the self-proclaimed anglophile was able to take part in his English language classes.
4.3.2. General Education
Since Ben was very young at the time he started primary school, he had and still does not have a clue about the effort it took from his parents to get him into a regular school. While Ben tells me that everything went absolutely smoothly and does not really understand the
6 A Hauptschule used to be a type of school for 10 to 14 year old students planning to do an apprenticeship afterwards. In recent years, however, it was gradually replaced by a new form of school called NMS, which stands for Neue Mittelschule (New Middle School). The idea behind this reform was that students would not have to decide at the age of 9, whether they later wanted to pursue an apprenticeship or a university degree. The NMS allows for students of all competence levels to be taught together and decide at the age of 14, whether they would like to continue their academic career or learn a trade. (“Neue Mittelschule,” 2016) ~ 73 ~ reason for my questioning whether there were any troubles in integrating him in a regular school, his father tells me that he had to argue with his district’s school inspector for almost half a year, until he seemingly gave up and allowed for Ben to go to the same school as the friends he had already become acquainted to in kindergarten. More important to Ben’s father was, however, the fact that Ben would further grow up around non-disabled students and prosper with them.
4.3.3. Relationship to peers
Ben entered school completely unaware of the fact that there might have been any troubles or any doubts that he would belong in a regular school. He had no fears of getting in touch with new and non-disabled children, and tells me that he quickly formed friendships with most of them. Being called disabled or even spastic was never an issue for him as well. When I ask him whether he had rather I use different words, as some people might not want to be associated with said terms, he answers: „Doch. Ich schon bitte. (...) Das bin ja ich, also warum solltest du da anders sagen? [No, please do call me that. (...) That is what I am, so why would you say otherwise?]” Ben tells me that his disability was never a topic, but his friends were aware of it, and did not shy away from talking or asking questions about it. His mother recalls that there were never any fears of contact with Ben either, and his friends played around with him, as well as his wheelchair, in a very natural and fearless way. Mrs Bricks, Ben’s former English teacher in the Hauptschule, remembers:
Most of his peers were really lovely in helping him with anything, but, you know, not in a patronising way. They accepted him as one of them, who needed a little help every now and then, and could not always keep up when they were running around. But that was not really a problem. Not for them or for Ben.
Ben himself tells me that he has never had any problems with asking people for help, and that it never hurt his pride, as he knows what he can and cannot do, and has accepted it very early on. During school lessons, however, Ben’s peers rarely had to help him, as he had an assistant, whom I will refer to as Ellen, for most of his school career. Ben and Ellen got along great and she helped him with eating his lunch, going to the toilet, and doing his school work.
4.3.4. Language Education
Although he always enjoyed his English lessons and only received good marks, Ben has had two rather different experiences with foreign language teaching in the two secondary schools
~ 74 ~ he attended. I was, however, also able to detect many similarities. Both will present themselves in the following.
4.3.4.1. Hauptschule
Ben tells me that he loved English lessons in both of his secondary schools, as he loved all of school in general; a statement his parents and teachers confirm. Mrs Bricks tells me that Ben was always very attentive and keen to demonstrate his knowledge and competences. “He would raise his hand at literally any question. [laughs] I doubt that he always knew the answer, but he just loved to talk so much that he took every chance.” Unsurprisingly, Ben mostly scored top marks in English, and never had any problems with following the general curriculum. His mother tells me: “It is amazing what he can remember. When they learned new words at school, he would just remember them without really having to revise a lot. He just hears something and remembers it, (...) if he wants to. [grins] ”
Although Ben’s hearing is impeccable, he does have some issues with his sight. The shortsightedness caused by his cerebral palsy means that Ben was sometimes unable to read what was written on the board, and had to have his assistant Ellen write it down for him and put it into his map, so that he could go through it at home. This was also helpful because, although Ben can read, he does need more time and effort than most people to do so, due to the struggle it takes for him to control his eye muscles. Therefore, Ellen’s main job in helping Ben during his English lessons was not only to bring books to him and open them for him to read, but most of the time she would read tasks out to him, so that Ben could tell her the correct answers, which Ellen would then fill into the Course Book. Ben’s teacher tells me that during most lessons this was no problem, as there was a certain noise level anyway, and Ben’s talking did not disturb his peers. His independent reading was mostly done on the computer, as his assistant could write the respective tasks or texts in a larger font size. Ben also tells me that he sometimes asked Ellen to put the monitor closer to him, so that he could better see what he was reading and writing, which is something he still occasionally asks of his new assistant in the workshop he is now employed in.
Ben’s keyboard was also adjusted to his needs and had an extra template with larger letters, which he does not need anymore, as he was able to train his fingers well enough to meet normal sized keys with the help of regular physiotherapy. Although Ben is able to use his hands to some degree, he has never learnt to write with a pen, but was immediately taught to use a keyboard in elementary school, when his father bought a computer for him so that he ~ 75 ~ could follow the regular curriculum without falling behind. Since then, Ben has been training his writing regularly, so that he is now quite content with his proficiency at using a keyboard. Despite his improving ability to write on a computer, however, Ben did not write all of his language exams, but would do some of them orally. Mrs Bricks tells me that this was an arrangement they made in order to save time, as Ben always needed extra time for exams, whether it be oral or written exams, especially if the English lesson was late in the school day.
Sometimes, when the test lasted for the whole lesson, it was just easier to have his assistant leave the room with him and do the exam orally, because he would have needed even more time with the writing and then the next lesson would have started, and, you know, when it was just about vocabulary or using the right tense I did not mind, if he proved his knowledge orally or written down. [...] Sometimes my English lessons were in the 5th or 6th lesson and you could really tell that [Ben]’s concentration was getting worse and it was harder and harder for him to concentrate, which made him need more time as well.
Although his peers would sometimes whinge about wanting to be given extra time too, Ben assures me that there were never any real issues and any complaints about the arrangement being unfair were always banter between friends. Ben himself never had a problem with having to do most exams separately and on his own, and actually tells me with some pride I can detect in his voice that, as he cannot whisper due to his disability and the consequent loss of control over his vocalisation, he had to leave the room, so as not to help the others by giving away the correct answers, as he was so good in English. I dare to doubt that he knows what exactly a mother tongue is when he tells me that English is practically his mother tongue, but one thing that is for sure is that Ben certainly does not lack any confidence with his English, which cannot be a bad thing, as it clearly motivates him to switch into English as often as possible during our interview and only answer longer questions in German which he would not be able to talk to me about in English.
4.3.4.2. Speech
One thing Ben is very much aware of is his peculiar pronunciation. He tells me that he has had speech therapy throughout his entire school career, starting in kindergarten, and his parents still continue to train his speech apparatus at home, which he is convinced continues to help him speak better in German, as well as English, and be more easily understood. One of the first things I notice when talking to Ben, is that he replaces [s]- and [ʃ]- sounds with a [x]- sound. This is a technique his speech therapist has taught him, which makes talking easier for him, yet still allows him to be understood, especially in English, which rarely features the [x]- sound, meaning that there can hardly be any misunderstandings. Whether Ben says “I mi[ss] ~ 76 ~ you.” or “I mi[x] you.” will make no difference to his interlocutor, who, even without knowing Ben, can quickly realise what he is doing. Despite having found a suitable technique to replace certain sounds that are more complex to produce, Ben understands the importance of continuous speech therapy, and is still training his tongue musculature with speech exercises or also tasks such as eating yogurt with a spoon.
Ben tells me that, like my previous participant Aaron, he too finds it harder to speak clearly when he is nervous or agitated. Although he rarely gets nervous nowadays, he would get very nervous when having to speak in front of his class at school. Nonetheless, he never shied away from giving presentations or showing up to say something in class. Mrs Bricks tells me that there was never an issue with Ben’s peers becoming impatient or not listening to him. Interestingly enough, when Ben complains that people do sometimes interrupt him and I ask him to name an example, the first person he refers to, albeit laughing, is his mother. I have noticed too, when sitting with Ben and his parents all together, that, like Aaron’s parents, they often interrupt him to finish his sentences or tell the story themselves, which I have noticed to annoy Ben. He tells me, however, that especially in the Waldorf school he attended after the Hauptschule, people were very respectful and patient towards him in letting him finish what he wanted to say, which was even more important then, as practically everything was done orally, and Ben’s final evaluation also depended on his oral performance and effort.
4.3.4.3. Waldorf school
As was mentioned before, during his time at the Hauptschule Ben was accompanied and assisted by Ellen, who would help him during lessons, as well as breaks. However, his English teacher at the Waldorf school, whom I will call Mrs Burns, tells me that, thanks to ongoing physiotherapy, Ben actually needed less help throughout the years. By the time he was 14, Ben had acquired enough independence that Ellen was not deemed necessary anymore for the second part of his secondary education. His father tells me:
Well, we knew that the Waldorf school was an integrative school already, so they knew a lot about disabled children and we knew that he would get the help he needed without a personal assistant, so we just kind of said ‘Okay, let us try this and see how he can cope.’, and he did miss [Ellen] a little I think, but he loved it. You could see, also, how he loved not needing an assistant anymore. It really made him feel grown up and independent, I think.
Even Ben’s speech therapist was not needed anymore, as there was speech therapy in the Waldorf school and Ben’s parents were keen to continue his speech training at home as well. Although Ben has got only nice things to say about his time at the Hauptschule, he really ~ 77 ~ lightens up as soon as I ask him about the Waldorf school. Before I can ask him anything in particular, he starts reciting the exact lesson plans they had and what they did in each lesson. Music seems to have been an essential component of his education at this school, even more so than in the Hauptschule, which also incorporated a lot of music in its language classes, and Ben tells me that he loves everything to do with music. The general schedule and also the English lessons at the Waldorf school were filled with music and dance, which Ben equally participated in and still smiles when talking about.
One thing that strikes me the most, however, is that Ben and Mrs Burns tell me that they only conversed in English during his time at her school. Even when they saw each other in the hallway, the teacher recalls that Ben would insist on using English.
He was always really confident with his English and wanted to use it whenever he could; not just with me. When he heard that someone could speak English, he wanted to switch languages with them. I do not know, who gave him this confidence, but it is just great, is it not? I mean, he often struggles to find the right words, but that never worries him or makes him feel insecure. He just asks for the German word and then keeps going. That kind of fearlessness is really rare. I was really impressed by that.
Ben tells me that he consciously wanted to continue to practise his English, as Mrs Burns rarely spoke English in her language lessons, because Ben had many mentally disabled classmates in the Waldorf school, who did not understand English well enough. While he tells me that he did understand that English was in this case inappropriate to use, he did miss it and even started to miss the presentations he had to do in his previous secondary school. He even says that he did not like the fact that there were no real tests in the Waldorf school and everything was done orally, as he always fared well in them, was not nervous by the prospect of a test, and missed the chance to officially prove how good he was. Another thing Ben and especially his parents were not too happy about, was that Ben hardly got to use his computer anymore. His father recalls:
You could immediately notice that he got worse. The only thing he had to write were some German texts every now and then and it started to take him longer than at the Hauptschule, so we started doing little writing tasks with him at home, so that he would not unlearn it and get worse at spelling too.
4.3.5. Life after school
Despite Ben’s slight dissatisfaction with the casual nature of the Waldorf school, he enjoyed his time there so much that he would have liked to seize the opportunity to stay one more year, which his father, however, did not allow him, as he deemed him too old to still go to ~ 78 ~ school at the age of 20, and wanted him to start working. “I am still mad at him for this.“, Ben tells me. Like Aaron, he is now employed in a workshop, where he mostly tinkers with wood and paints, but also continues to train his reading and writing ability. He tells me that he enjoys his work there a lot and would not wish to be anywhere else. He even tells me that he always knew that a regular job would be too hard for him, but is perfectly fine with his situation, and has never had problems with the limitations his disability imposes on him.
Ben is still in contact with some of his friends from the Waldorf school and frequently chats with them over WhatsApp on his new tablet, which his mother tells me is the best thing she and her husband have ever bought for their son.
He takes that thing with him wherever he goes, and I know many parents hate it when their kids are on these things all the time, but for him it is just kind of like he is constantly learning, you know. His writing has gotten so much better since he got Facebook and now WhatsApp, because he writes with his friends all the time, and sometimes even in English, so we are really happy with how good he has become with these devices.
Ben himself tells me how motivating he finds it when he realises how much quicker he is now compared to last year, or the year before, or his time at the Hauptschule. His computer work at the workshop fulfils him and gives him a more serious task besides the tinkering and painting he does. He considers it to be his thing, as he cannot do many things with his hands, but credits his supportive Hauptschule for having trained his ability to work fairly independently with a computer.
When I ask Ben, whether he is still working on improving his English, he tells me that he sadly has stopped studying English and is not really doing anything to improve his language competence. I find this statement particularly interesting, as his parents and even Ben himself have told me that he likes to watch films in English, and listen to English music and try to understand the song’s meanings, even looking up certain words every now and again. Aaron’s mother, who has introduced me to Ben and is a native speaker of English, has told me that she mostly chats with Ben in English over WhatsApp. It seems, therefore, that Ben’s relationship with English has in no way ended, and he has managed to include it in his everyday life so much that he does not even consider it studying anymore, which is, of course, a wonderful thing.
~ 79 ~
4.4. Chris
4.4.1. Background
Chris is 20 years old and went to both a rural regular primary school, as well as secondary school. The kind of secondary school he attended was a Hauptschule, just like Ben’s, which means that he graduated at the age of 14.
Chris has got spastic diplegia, meaning that his legs are more affected by spasticity than his arms. Additionally, he is hypotonic, meaning that his muscle tone is lower than the norm, as opposed to Ben, who is hypertonic, meaning that his muscle tone is higher than the norm, and Aaron, who is athetoid, meaning that his muscle tone shifts between being higher and lower than the norm. After being classified as 75% disabled for a while, with the hopes that he might one day be able to walk with the help of only a walking frame, Chris is now completely wheelchair bound and classified as 100% disabled. He does, however, have better use of his hands than my previous participants, and can do many things, such as eating, drinking, and driving his wheelchair, completely on his own, leaving him with a care level of only 5, which means that he is also granted 180 monthly hours of assistance and care, but does not need constant help and looking after like Aaron.
Different to Aaron and Ben, Chris tells me that at the age of 12 to 13 years old he actually did go through a phase of self-doubt, where he questioned his fate and why he had to be disabled. He tells me that this attitude towards his own disability also made it harder for him to approach new people and form close friendships. Although he has now learnt to accept himself the way he is and appreciate everything he was given, it will be interesting to explore whether said self-doubts might have influenced the atmosphere in Chris’ class and his relationship to his peers.
Having known Chris for a long time as well, and having been in contact with him a lot more than with any of my other participants, it is very easy for me to understand him. This is, however, also due to the fact that Chris’ hypotonia does not make his speech as unintelligible as Aaron’s or Ben’s. The most prominent characteristic of Chris’ speech is that it is very slow and slurred. Due to his low muscle tone, it takes a lot of time and effort for him to talk, and his listener must be patient. The following findings will show, whether his peers and teachers always showed such patience towards Chris, and whether, despite his speech and motor impairment, he was able to have a good language learning experience.
~ 80 ~
4.4.2. General education
Unlike my previously introduced participants, Chris’ intellectual abilities were actually tested before he started elementary school. When the headmaster of the special education school he was about to attend did a general knowledge test with him, Chris and his mother recall that there was no doubt that he would be fit to attend a regular school. Nonetheless, it was not easy to find a school that would be willing to take Chris on, as many feared that it would be too expensive and time-consuming to take on a disabled student, who would need barrier-free access and special assistance within the lessons, as well as outside of class. Chris’ mother tells me that she was lucky enough to profit from another disabled student’s father’s efforts to get his son into a regular school, and could convince the respective headmaster to take on her son as well, resulting in Chris being put into an integration class with two further disabled children and 20 non-disabled children.
Upon Chris’ entry into secondary school, he and his mother were positively surprised by how well prepared the school seemed. After the previous struggle to get Chris into a regular primary school, his entry into secondary school proceeded a lot smoother. Chris and his two disabled classmates, who also accompanied him into his secondary school, were helped by the same assistant throughout their entire school career. Additionally, Chris’ secondary school class had a second teacher, who would prepare separate materials for Chris’ two physically disabled peers and another mentally disabled peer, who all had learning difficulties. Chris himself, however, was always able to follow the general curriculum without any problems, and therefore mostly listened to the main teacher, whom I will call Mrs Adams, like his non- disabled peers, while the second teacher would work with his disabled peers in the same classroom. Chris tells me that the two teachers talking simultaneously was never a problem, as the second teacher was very quiet and did not talk as much as Mrs Adams, simply giving the odd further instruction when needed, while Chris’ assistant was mostly working quietly with his other physically disabled peers, and Chris was participating in the main lesson, only needing his assistant on occasion.
The fact that Chris had an assistant was never an issue with his peers and nobody was jealous of the extra help he received, as he tells me that they all understood that he did not gain any advantages from it, but it was simply necessary for him in order to keep up. He explains:
Es hat mir auch keinen Vorteil verschafft [starts giggling], dass ich Assistenz habe*, weil Einsagen hat es da nicht gegeben [laughs]. Also, es war schon sehr darauf bezogen “Du sollst
~ 81 ~
und du musst eigentlich für dich lernen.“. [...] Das war für uns auch alle okay so, weil das hätte uns ja nichts gebracht im Endeffekt.
It did not bring me any advantage [starts giggling] that I have* assistance, because there was no prompting [laughs]. It was very much about “You should and you must really learn for yourself.”. [...] It was okay for all of us like that, because, ultimately, that would not have gotten us anywhere.
Although Chris’ assistant did not have to help him with as many things as his disabled peers, Mrs Adams tells me that the longer the school day got, the less concentrated he was, and the more his assistant had to check him for mistakes in his writing or speaking. Chris has only got good things to say about his assistant and all of his teachers and their behaviour towards him, though, and tells me that he only found out after he had left school and met other disabled people through his work life, that as good a school experience as his was not self-evident, and he does not take it and the respectful and empathetic teachers he had for granted. Chris even doubts that he would fare as well as he has during his school career in the new Austrian school system that renounces the three former competence streams and teaches all competence levels in one group. Whether the new system really is less advisable for cerebral palsied students, might present itself with two further cases, who respectively have visited and are still visiting a so called NMS.
4.4.3. Relationship to peers
As was mentioned, although Chris did have disabled children among his classmates, most of them were “normal”, as he calls it. Chris himself was never scared of the prospect of going to school with non-disabled students. He tells me that it was probably also due to the fact that one hardly thinks about possible consequences at the tender age of 6. Everything went extraordinarily smooth, though, and Chris’ classmates quickly accepted him as one of their own. His mother tells me that, as Chris’ new classmates had already known one of the other two cerebral palsied children from kindergarten, none of them were shocked to see a disabled child in a wheelchair, and treated Chris like any other peer. Most of Chris’ classmates did not accompany him into the same secondary school, though, and he had to make new friends when he entered the Hauptschule, which, he admits, did make him nervous, as he did not know, whether everyone would be as accepting of him as they were in his primary school once more. He explains:
Aber ich treffe neue Leute eigentlich eh immer total gerne. Man muss halt zuerst einmal herausfinden, wie die so zu dir stehen und ob das gut geht. Aber ich bin ein total geselliger Mensch und verstehe mich von mir aus eigentlich mit jedem gut, würde ich sagen. ~ 82 ~
But I generally always really like meeting new people. One just has to find out first, how they perceive you, and if it is going to work. But I am a very sociable person and, for my part, get along well with everyone, I would say.
Luckily, Chris was again able to quickly form friendships, and immediately felt like an equal member of the class; just like his disabled friends, he reports. On occasion, Chris’ classmates would also help him during lessons, if they had already finished their tasks. Chris tells me that it was never a problem to find someone to help him, as he had nice friends in his class, who would not have to be told to help him by the teacher. This willingness to help him, and also the fact that he could return the favour if his friends needed help with a computer or an English word, made it easier for Chris to accept their assistance.
4.4.4. Language education
„Ich habe mir mit Sprache sehr leicht getan, eigentlich, auch was Deutsch betrifft, und Englisch war da jetzt nicht das große Böse. [Language was actually very easy for me, also German, and English was not the big evil then.]“, Chris tells me with a chuckle in his voice. His favourite subject was English, and he always received top grades in it, although he tells me that he loves languages in general, as they open up new worlds and especially some proficiency in English makes international relations a lot easier. Nonetheless, just like Ben, in the main subjects Mathematics, German, and English Chris was put into the latter of three competence streams, which, as Mrs Adams assures me, was, however, purely due to his working pace, and he was actually the best among his group. Seeing as his teachers knew about Chris’ competences and intelligence, and understood that his decelerated pace was not caused by a lack thereof but by his motor impairment, he never minded his place in the third group, and was glad about the extra working time it allowed him.
The former student tells me that he never suffered from any pressure to succeed academically due to his physical disability, and was actually quite lazy in some subjects. He simply wanted to be evaluated fairly, especially in English, since it was his favourite subject and he knew himself that he was quite good at it. Knowing that his teachers and peers were aware of his abilities and competences also helped Chris in feeling free enough to ask for any kind of help he would need during his lessons, without fearing that he would seem less competent.
Nach Hilfe zu fragen ist teilweise schwer. Aber bei gewissen Sachen, sage ich einmal, wenn man Hilfe braucht, bleibt einem nichts anderes übrig, also muss man das dann irgendwie überwinden. Aber es klappt eigentlich jetzt ganz gut, denke ich einmal.
~ 83 ~
Asking for help is difficult sometimes. But with certain things, I would say, if you need help, it is the only option, so you have to somehow overcome this. But it is actually working quite well now, I think.
He tells me that he did need and call for his assistant when something had to be filled out in the Course Book or even read in it, as the font size was too small for him to read properly. Reading things from the board was also an issue, due to Chris’ shortsightedness, which is an issue most of my main participants are facing. Although Chris was sat closer to the board upon his request, he still often struggled to read Mrs Adams’ writing, which lead to his second teacher usually preparing an extra worksheet for him that had all of the lesson’s main points on it, so that Chris could follow it step by step on his sheet, while his peers would read the same notes from the board. If something was to be written down and Chris could not cope with the time, due to his seeing impairment and slowed writing, there was never a problem with borrowing one of his friends’ notes until the next lesson.
Although Chris did learn to write separate letters and certain words, such as his name, by hand in primary school, so that he is now able to sign things on his own, he has quickly shifted to the computer his parents had to buy for him, so that he could learn to write at a fairly rapid pace, which would forever have been difficult for him to do with a pen, due to his issues with fine motor skills. Although Chris still uses only two fingers to type on his keyboard, his writing pace has improved significantly throughout the years, so that in secondary school he was already quicker than his fellow disabled peers, and did not require as much extra time as them. In hindsight, Chris now also credits this on the regular physiotherapy he received during his early school career, although he does admit to having stopped it during puberty, as he grew bored of it. „Im Nachhinein gesehen war das sehr dumm, muss ich sagen. [In hindsight, that was very stupid, I must say.]“, he tells me as he takes a deep breath. Two further hip-operations during Chris’ school time also helped him a lot with being able to sit for the entire school day, without suffering back pain.
Like my previous participants, Chris particularly enjoyed all things to do with music, and was especially enthused when Mrs Adams analysed song lyrics with her class. He tells me that he finds that music always lightens the mood, makes one more relaxed, and contributes to the fun-factor of a lesson. “Fun is very important with a language.“, he tells me. Chris also found it easier to remember the content of rhymed words than any other text, although, if he wanted to be, he was generally a good learner, as his mother, Mrs Adams, and Chris himself tell me.
~ 84 ~
4.4.4.1. Speech
Speech therapy was not as much of an issue for Chris, as it was for most of my other participants, as he does not have as grave a speech impairment as they do, and can more easily be understood. His main English teacher, and also the second teacher, who was mostly present during Chris’ English lessons, did have to do some pronunciation exercises with him, though, as he struggled with certain sounds the English language features. While the English way of rolling the [r] was never an issue for Chris, he still cannot produce the [θ]- and the [ð]-sound, and has learnt to substitute them with an [f]- and a [v]-sound respectively. “Like a real Londoner”, he jokes. He is keen to let me know, however, that such pronunciation exercises were also done with other students, and were not just a special arrangement for him, as he tells me that his teachers were always intent on teaching their students correct pronunciation.
Chris tells me that, like Aaron and Ben, he also struggles with his speech when he is nervous or agitated. „Nervosität ist sehr einschränkend. [Nervousness is very restricting.]” He tells me that his speech becomes less powerful and more slurred, which was an issue during Chris’ presentations in front of his class. He was always very nervous and tried to calm himself down by telling himself that nothing bad could happen, as he knew his stuff and was always well prepared. He also tells me that Mrs Adams would make jokes to lighten the mood and lessen the notorious presentation feeling in class. Simply raising his hand and saying something in front of his peers was never an issue for Chris, though, as he felt more amongst his peers and less alone when he was not stood in front of the classroom, but on his place.
Chris tells me that there were never issues with him being able to finish his sentences, and both his peers and his teachers were always patient enough to let him finish and stay attentive until he was done. He also tells me, though, that, luckily, as he says, his peers did not shy away from laughing, if he said something in a weird and funny way, as he did the same, if one of his peers misread something, or said something that was wrong.
Das finde ich ja gut, weil das macht das Normal-Sein aus, sage ich jetzt einmal, oder einfach die Integration, dass man sehr wohl über Sachen lachen kann. [...] Aber dass sich jetzt wer beschwert hätte „Du redest jetzt so unverständlich, aufgrund dessen, weil* du eine Behinderung hast.“, also das hat es nie gegeben. Also, wirklich nie.
I think that is good, because that is what constitutes being normal, I would say, or simply the integration, that you can in fact laugh about stuff. [...] But somebody complaining “You are talking so unintelligibly now, because of the fact that you have got a disability.”, that was never the case. Really, never.
~ 85 ~
Chris also has never had any personal issues with people occasionally not understanding him, and asking him to repeat an utterance. He tells me that his only issue remains to be that he cannot stop talking once he has started. Mrs Adams confirms this statement with a smile, and tells me that even in English he had quickly managed to acquire enough vocabulary to talk a lot more than most of his peers, and contribute a comment to almost any subject matter. When I sit down with Chris and his mother, he is uncharacteristically quiet, though, and does not speak very much, especially because his mother often does the same as Aaron’s and Ben’s in finishing his sentences, or taking over for him when he is about to tell a story.
4.4.5. Life after school
Chris tells me that he is very happy with the language level he was able to acquire throughout his secondary education, but is also aware of the fact that one forgets rather quickly. His positive school experience with the English language, and the linguistic confidence his teachers were able to install in him have led him to further his language competence by watching English films, frequenting language courses, and even flying to London for two weeks to do a practical training abroad, where he learnt valuable things about how non-verbal children can learn to communicate via modern technology or other auxiliary means; for example, with the help of computers, laptops, tablets, talkers, or also just images or classical sign language. Chris was astounded by the amount of assistance disabled students seem to get in England. He visited schools of one hundred students, where each of them receives one-on- one assistance, which, he explains, is possible due to the private sponsors Austria is lacking.
Chris tells me that he did not fear being lost in a different country, amongst unknown people, and having to speak mostly English, as he went there with his work colleagues and was fairly confident with his English to begin with, because his secondary school managed to give him a firm foundation, which he has been able to build on ever since, so that he is now able to lead simple conversations fully in English. Chris is still very thankful to his school for always believing in him and furthering his language competences, as he has since found out that not every school is as supportive.
Ich kenne nicht so viele, die es wirklich schaffen, eine zweite Sprache noch zu erlernen, die eine Behinderung haben, weil da einfach gesagt wird „Ah, du kannst das eh nicht.“ und „Vergiss es!“. [...] Ich kenne viele [Behinderte], die nie Englisch gehabt haben in der Schule. [...] Es wird von vorne herein gesagt, aufgrund der Lernschwäche oder Behinderung, „Nein, Englisch lassen wir gleich weg, weil es ist zu viel.“ Obwohl, da geht es oft um die einfachsten Sachen, denke ich mir, die man sehr wohl lernen kann. Man muss ja jetzt nicht einen Aufsatz in Englisch schreiben. ~ 86 ~
I do not know so many people with a disability, who really manage to learn a second language, because it is just said “Ah, you cannot do that anyway.” and “Forget it!”. [...] I know many [disabled people], who have never had English in school. [...] It is said from the outset, because of the learning impairment or disability, “No, we will leave out English right away, because it is too much.” Though, it is often about the simplest things, I think, that can very well be learnt. You do not have to write an essay in English.
Having had such a wonderful time at school, Chris tells me that he did fear not being able to repeat the pleasant experience in his work life. He was, however, lucky enough to find a job that fulfils him, and colleagues that have become true friends to him. Chris is now employed at an organisation that concentrates on providing fulfilling jobs for people with different kinds of disabilities, in order to allow them to exploit their individual capabilities and competences, and work at their own paces. He mainly sets up modules and conducts potential assessments, but is now also involved in a side project that aims to represent disabled people’s rights in the general public, and educate it on these people’s needs and desires. Furthermore, he is fighting cyberbullying, as he considers it a very current issue especially disabled people are facing. Chris is very passionate about fighting for disabled people’s rights to receive adequate education, and not be put into special schools if they possess the potential for more. Although certain subjects did not interest him as much as others, he is still very glad to have graduated from a regular secondary school, and does not believe that he would be as happy as he is now, had he gone to a special education school.
Ich finde das halt schlimm, weil man sollte schon schauen, dass man jedem die Möglichkeit bietet, weil die Sonderschüler werden immer so- Es ist dann immer so eine Randgruppe, nach wie vor, muss man so sagen.
I just find this bad, because you should make sure that you offer everyone the opportunity, because students from a special school are always being- It is always a kind of fringe group, still, it must be said.
The fact that Chris now has got only little contact with his former classmates is not due to his disability directly influencing friendships. He had some problems in connecting with people, and letting others come close to him, as he struggled to accept himself. It was only after school that he started to develop more self-confidence and initiative in approaching people. While Chris himself credits this change to the ending of his puberty, his mother tells me that she saw a significant improvement in Chris’ self-worth after divorcing his father. She believes that her ex-husband unconsciously made Chris feel bad about himself by not knowing how to connect with him, as he is an extreme athlete and has few hobbies aside from sports. Seeing as Chris could not keep up with his father’s passion for sports and also never developed any
~ 87 ~ interest in disabled sports, his father had hoped that Chris would at least thrive academically, which was not very realistic either, as Chris himself admits that, although his parents wanted him to do an apprenticeship, he soon had to realise that he could not physically keep up with the demands of a regular full time office job.
Consequently, Chris had to come to terms with certain limitations in his life, although he tells me that he is now very much at peace with where he is at in his life, which I do believe him, as I must say, he makes a much more relaxed, content, self-reflective, and sensible appearance than he did while he was at school. His mother tells me that being freed from the unrealistic expectations his father and admittedly she herself had, which included the hope that Chris might continue his education until the age of 18 and get a high school diploma, was liberating for Chris, and made him a much happier person. Chris himself tells me that the most important thing for a disabled student among non-disabled students is to not try to hide their disability and keep up with others in areas, where it is sheer impossible.
Je eher man die Schwäche akzeptiert, sage ich einmal, und man sagt „Ja, ich habe das.“, desto leichter wird man sich tun, weil dann kommen halt andere Stärken hervor. Weil es kann ja sonst auch nicht jeder alles. Das ist eigentlich, glaube ich, eines der größeren Probleme, was da im Alltag auf einen zukommt, dass man immer mithalten will und denkt „Ich muss jetzt quasi normal sein, weil sonst bin ich unten durch.“ Ich glaube nicht, dass das so gut ist.
The sooner you accept the weakness, I would say, and you say “Yes, I have got this.”, the easier it will be for you, because then other strengths emerge. Because elsewhere not everyone can do everything as well. That is actually one of the bigger problems, I believe, that comes at you in your everyday life, that you always want to keep up, and think “I have to sort of be normal, because otherwise I am in disfavour.” I do not believe that that is so good.
4.5. Dan
4.5.1. Background
Dan is 17 years old and went to a regular primary and secondary school. Both of them were rural, but well attended with up to 20 students per class. Dan’s secondary school was formerly a Hauptschule, like the one Ben and Chris attended, but has been an NMS for all of Dan’s school career. It will, therefore, be interesting to see possible changes between the old school format and the new one.
Dan has got spastic tetraplegia, like Ben. He is also 100% disabled, although he is less spastic than Ben, and has got better use of his hands, meaning that Dan is classified under a care level of 5, like Chris. An interesting difference between Dan and my other participants is that he ~ 88 ~ has had a myotenofasciotomy, the same procedure my brother has undergone, and which I have already elaborated on in my literature review. Dan and his parents tell me that this procedure has had a significant impact on Dan’s academic performance, and they are certain that he would not be able to work as efficiently as he is now, had he not undergone the surgery. It will, therefore, be fascinating to explore Dan’s school experience before and after his operation, and see which things exactly it has actually changed.
Not having known Dan before, it again took a short time getting used to his particular way of talking, as he does have a strong speech impairment as well. Yet, it was no issue after a few minutes of listening intently, and getting to know his strategies and techniques for pronouncing difficult words and sounds. The following findings will show how Dan could cope with his speech and motor impairment at school, and whether his teachers knew how to get the best out of him.
4.5.2. General education
Although Dan’s parents were always keen on getting him into regular schools, Dan himself actually tells me that he did not really care about the kind of school he would be attending, and whether there would be mainly disabled or non-disabled students. He does, however, admit that he found it interesting to discover, how non-disabled students would react and respond to him, so he was intrigued to continue his school career amongst “normal” children, as he also refers to them. Different to the struggle it took for Ben’s and Chris’ parents to get their sons into regular schools, Dan’s father tells me that not a lot of effort was necessary, as times have changed over the last decade, and both Dan’s primary and secondary school had already had disabled students before him. Similar to Chris, Dan even had another disabled classmate for 3 of his 5 elementary school years, for whom he repeated 2nd grade, so that they could be together in one class, as it was easier to manage for the school, which only had one barrier-free classroom on the ground floor, and also the second boy’s parents, who did not need to hire a separate assistant for their son, as Dan already had one. Dan tells me that he had no problems with this arrangement, as he is generally a very open person, when it comes to meeting new people and facing new situations. Also, he knew that his old friends would still be in the same school building as him, and he would continue seeing them in his breaks, and even gain new friends in the new class, so he regarded it as a win-win situation.
Although Dan was not very happy with one of his primary school teachers, and his mother tells me that it was because she would simply negate the fact that Dan had a disability, and ~ 89 ~ expect the same from him as she did from the rest of her students, Dan did very much appreciate the strictness of his secondary education, and tells me that his teachers knew exactly how much they could ask of him and, although he was exhausted at times, he never got angry with them for how much they pushed him. Dan’s mother recalls, how he would sometimes come home exhausted and drenched in sweat, but never doubted that his teachers knew what they were doing, and could also see the results herself and how happy they made Dan. She credits this to Dan’s teachers’ effort in really getting to know him, and discovering his limitations, which allowed for them to demand a lot, but seemingly never too much. It is an absolute joy, listening to how loving and supportive Dan’s environment seems to have been. He has got only good things to say about most of his teachers, peers, and most of all his assistant, whom I will call Julia. As a person, Dan always felt included and treated as an equal. As a student, he always felt evaluated fairly and furthered optimally. „Das haben sie wunderbar gemacht. [They did a wonderful job.]”, he smiles.
4.5.3. Relationship to peers
When talking of Dan’s friends, one seemingly can only speak of winning, as he himself and his parents and teachers recall the incredibly close and special bonds he has managed to form with friends he had met only in secondary school, but especially also in primary school, and most of all in kindergarten. Dan believes that part of why he was able to form such deep friendships was the fact that he can tell very quickly if someone is being truthful to him and really does like him for who he is as a person. „Das ist auch so eine Sache, die ich gut finde bei meiner Behinderung; dass man richtig Leute[n] in die Seele hineinschauen kann. [That is also something I find good about my disability; that you can really look into people’s souls.]” Dan explains that, although he has managed to make good friends throughout his school career, no relationship was ever able to come close to the bond he still shares with his kindergarten friends. Julia recalls how Dan’s peers would play around with him in the school yard, and fight over who was allowed to push his wheelchair. „Er war immer extrem beliebt unter allen, weil er einfach auch so eine fröhliche Art hat und alle damit ansteckt. Man fühlt sich einfach wohl in seiner Gegenwart. [He was always extremely popular, because he simply has got such a joyful manner and infects everyone with it. One simply feels good in his presence.]”, she tells me.
Dan further explains that, as long as they are not misused as swearwords, he does not mind the use of terms such as disabled or spastic, as that is simply what he is, and he actually finds
~ 90 ~ people who do not shy away from utilising said terms more normal than those who pity him, and try to wrap him up in cotton wool. „Hauptsache, man geht offen auf mich zu. [The most important thing is that people approach me openly.]”, he affirms. In order to insure this, and prevent people from being nervous when spending time with him, Dan talked to any new peers at the start of a school year, and told them not to worry about using even politically incorrect terms in his presence, as he was not offended by them. This way, Dan himself made sure that the atmosphere between him and his classmates, and subsequent friends, was always relaxed and lighthearted. No one was ever afraid to laugh, when Dan had said something in a funny way, or had made a mistake, he and Julia both assure me.
Although Dan was always very easygoing when it came to people pushing him and even using his wheelchair when he did not need it (for example, while he was lying on the floor during a pick nick), there was one thing he did not want just anyone to do, which was getting adjusted in his wheelchair. Due to his increased muscle tone, Dan rarely sat in his wheelchair like most non-disabled people would, but mostly had his legs stretched out stiffly, which meant that he would often shift in his seat and slide down a little, needing someone to sit him up correctly every now and then. As he seemingly did with everything, Dan again took matters into his own hands, and spoke to his peers and teachers beforehand, telling them that he preferred to only be adjusted by Julia. This was, however, the only thing Dan did not want everyone helping him with, as he tells me that his friends simply loved helping him so much that he often let them do things for him, even though he could have done them himself, like driving short distances with his wheelchair. Excessive help was, however, only something Dan received from his friends, as he reports that his teachers and assistant knew exactly what he was capable of, and did not help him with things they knew he could manage on his own, even if it took him some effort.
4.5.4. Language education
Although there were no competence streams anymore by the time Dan started his secondary education, he was taught in a separate group of 7 students in the main three subjects, similar to how it was for Chris. Dan’s English teacher would then go through the same materials as the main class, but give her group more time, and go less in depth, so that her students had more time to revise the main points. Although Dan does not have a learning disability like the rest of his group had, similar to Chris, he was fine with the arrangement, and trusted that his teachers were aware of his strengths and weaknesses.
~ 91 ~
Although Dan’s favourite subject was PE, he tells me that he has always loved languages as well, as he enjoys learning new words that he does not use in his everyday life, and finding connections to his mother tongue, like with words such as fish or house, which are phonetically very similar in English and German. Dan and his former English teacher, whom I will call Mrs Smith, tell me that he mostly had top grades. Despite his speech impairment, he particularly enjoys using English orally and speaking to people, which is something his language education seems to have prepared him for optimally. Mrs Smith tells me that speaking has always been a big part in her lessons, as she believes it to be the most powerful tool for interpersonal connections and social integration. In order to practise her students’ oral competence, music has always been her preferred tool. She tells me that it helps them practise their expression and pronunciation, as it shows them how words are combined and pronounced correctly, and prompts them to imitate the same way of expression and intonation in an unforced way. The teacher explains:
They hear how words can be put together, so that it is meaningful, and learn how to combine them correctly by listening to other people use the language. [...] [Also,] they practise their pronunciation but are not really aware of it, you know? Pronunciation and intonation have a lot to do with melody and rhythm, so music is the perfect way to practise pronunciation, I think. Plus, all children love music, no matter what age they are in. Music is never out.
However, Mrs Smith did not only use music to practise her students’ expression and pronunciation. She would also translate song lyrics with them, in order to expand their vocabulary and make sure they really understood what they were singing about. Dan tells me that he does appreciate songs more, if he knows what they are about and can really feel the meaning through the lyrics, as well as the melody. These musical elements were welcome breaks to Dan, who found writing tasks very demanding and stressful for a number of reasons. Firstly, Dan struggles with writing due to his motor impairment, like the rest of my participants. Secondly, he regards the English spelling as his biggest weakness, as English words feature many silent letters, which Dan tends to forget. Julia would help him in this regard by writing out the respective words on a sheet of paper in a large font, so that Dan could read them properly, and imprint the correct spelling in his brain. He would then copy the words onto his computer and check his spelling, comparing it with his assistant’s writing.
Julia tells me that these exercises took the most extra time, compared to Dan’s peers, as he struggled both with reading and writing. The first is again due to a seeing impairment caused by Dan’s cerebral palsy. Dan is shortsighted, like most of my participants, which again meant that he often could not read what was written on the board, and Julia wrote it down separately ~ 92 ~ for him on a piece of paper. Different to the other participants I have interviewed, however, Dan has got corneal curvature, which means that he also cannot see straight lines as they are but perceives them to be slightly bent, making it hard for him to recognise letters, especially if they are written in a small font. An H can then look like an N to him, for example. For a long time, Dan would have stickers of large letters on his keys, so that he could find the respective letters quicker. For most of his secondary education, he would not need them anymore, though, as he had memorised each letter’s location by then. Another tool Dan has learnt to do without during secondary school is a rubber keypad, like the one that can be seen in the image below, which features no openings. During primary school, Dan would need it so that the saliva he could not yet contain by then would not run into his keyboard’s openings and ruin it.
Figure 8: Rubber keypad
As Dan was never able to learn how to write in pen, the computers his father bought him for school have been his companions since the start of primary school. Although he did do many tests orally, if the focus was not on grammar and spelling, but content, or it was an hour-long exam that would have exhausted him on the computer, he did also write many tests on his PC, especially if they did not last the entire lesson and he had plenty of time to finish, despite the extra time he required. During these tests, Julia did not help Dan at all, but simply sat by to watch him and help if there was an issue with the computer. One time Dan did need Julia’s help in this regard, was when there was a power failure during a dictation. He amusedly remembers how the power went out right at the start of the dictation and went on again shortly after he had finished it. During this time, he was able to dictate the words letter by letter to his assistant, so that his teacher would be able to test his spelling, even though he had not written the words himself. This obviously took longer than usual, and Dan had to leave the classroom with Julia, so as not to disturb or help his peers by spelling out the words. Mrs Smith recalls that it was no problem, though, as the general dictation only lasted a few minutes, and Dan ~ 93 ~ had plenty of time during the English lesson to finish his dictation. Dan tells me that during any kind of writing he was never helped directly by Julia, but if he had made a mistake, she would occasionally mumble „Mm! Mm!”, letting him know that something was not correct.
4.5.4.1. Speech
Dan had speech therapy throughout his entire school career. During primary school, a professional speech therapist would take him and some other speech impaired students out of their lessons every now and then, and do speech exercises with them, as well as train their facial musculature. In secondary school, Julia would continue to do the same exercises with Dan, in order to keep him on track and prevent him from becoming lazy with his speaking. Dan tells me that he is thankful for these exercises, and credits them for being more fluent in his speaking, both in German and in English.
Despite his speech impairment, however, Dan sees his good pronunciation as his biggest strength in English. Mrs Smith tells me that Dan did in fact always have a rather good English pronunciation, and some of his speech problems actually benefitted from certain differences the English articulation system features, as opposed to the German one. One such example would be that Dan has always found it hard to roll the [r]-sound on his uvula, as is practised in Standard German. He found it a lot easier to produce it on his alveolar ridge, or not at all, as is done in Standard British English. (“Stimmloser velarer Plosiv,” 2015) The fact that, just like Chris, and probably most of my participants, he could produce neither the [θ]-, nor the [ð]- sound, was never an issue either, as he also learnt to substitute them with the [f]- and the [v]- sound respectively. Different to Chris, however, but similar to Ben, Dan also struggles to produce the [ʃ]-sound, which is something his speech therapist trained with him for many years, so that he can do it now, but still leaves it out, if he is in a hurry to speak, nervous, or unfocused. However, Julia tells me that, as Dan focused more on what he was saying in English, he usually did pronounce [ʃ]-sounds in his English lessons, despite leaving them out again, as soon as he would switch into German. A German Schwester (meaning sister) would then become a Wester, but an English ship was still a ship.
As was just alluded to, nervousness is something that always has and still does make it hard for Dan to speak fluently and clearly. Like my previous participants, he again tells me how restricting it is, as his body stiffens up, and he feels a huge amount of pressure running through it, which severely hinders his speech. Luckily though, Dan never found it nerve- wracking to speak in front of his class, whether it be to simply give a comment or an answer, ~ 94 ~ or actually do a presentation. The only times he did get nervous were before tests, where he feared that he might forget something, which, simply due to his nervousness, he tells me, occasionally happened. Julia confirms this statement, telling me that Dan mostly knew everything there was to know for an exam, as he understood and remembered things easily, but sometimes was overcome by exam nerves, which led him to forget some things in the heat of the moment.
Nothing like that, however, happened to him during any of his presentations. Dan was always confident with what he was going to say, and how his peers were going to perceive it. He is very content with how everyone was always patient enough to let him finish his sentences, and never interrupted him. Dan never felt like he bored anyone, when he was taking longer to get his message out, as his friends were all very much accustomed to his way of speaking, and never complained. Although Dan believes that some of his new peers had difficulty understanding him at times, that was never a real issue as well, as he made it clear straight away that they must not shy away from asking him to repeat his sentences, as he was never offended by people not understanding him.
When talking to Dan in German, the fact that, as opposed to Aaron, for example, he speaks perfect Standard German makes it a lot easier for me to understand him. He tells me that he does do it on purpose, in order to be understood more easily, but also admits that some of his expressions come from watching a lot of German television. Similarly, he also credits watching many films in English and listening to a lot of English music to his clear and refined way of expression in his second language, showing that he appreciated Mrs Smith’s strong focus on rhythmic language, and was inspired by her language education.
4.5.5. Dan’s final year
Different to my other participants, I find that Dan’s final school year should be regarded separately from his previous years, as he underwent a medical procedure in the preceding summer that changed his academic life to a huge extent. Like my brother, Dan travelled to Barcelona and had a myotenofasciotomy by Dr. Igor Nazarov. I have elaborated on the course of this procedure in section 2.2.4.1. of my literature review. Seeing as Dan had never had any operations before, he was very curious to see, whether the doctor’s prognoses would be correct, and he would indeed feel the huge relief in muscle tone the surgery promises to bring.
~ 95 ~
Dan and his parents tell me that they were thrilled by the improvements the operation brought about. His father recalls that they could immediately see how much calmer and less stiff their son was. Three days after the operation, Dan could already pick up small things with his left hand, which he could not do before. Dan’s parents tell me that the more time passed after the operation, the more improvements manifested themselves, which is typical for the procedure. When Dan re-entered school after several weeks, his teachers and assistant noticed the difference straight away. Julia tells me that, in the course of his last school year, Dan has learnt to use both of his hands effectively for writing, which has significantly accelerated his work pace.
Another thing that helped Dan immensely in becoming quicker is that he can see better since the operation. This is due to the fact that Dr. Nazarov also cut fasciae beside Dan’s eyes, allowing him to open them more widely, and consequently see more. A further positive aspect of the decreased muscle tone Dan’s operation brought about is that he is not as easily exhausted anymore, and can work harder without feeling the strain. Mrs Smith tells me that in his last year Dan was able to work quicker and get a bigger workload done than in previous years. All of this, and his mother tells me that he was also not as tired and sweaty anymore upon his arrival from school. She explains:
Das ist ja auch irgendwo logisch. Durch den verringerten Muskeltonus ist er jetzt generell nicht mehr so angespannt, und beim Arbeiten war er ja sowieso immer noch angespannter als normal, und seit der OP ist das eben schon stark verringert, und dadurch dass er seine Muskeln jetzt nicht mehr ständig so stark anspannt, kann er seinen Körper natürlich besser kontrollieren und ist auch nicht so schnell so erschöpft.
That is kind of logical, in a way. Because of the decreased muscle tone, he is generally not as tense anymore, and he was always more tensed up than normal when working anyway, and since the operation this has been strongly reduced, and, since he does not tighten his muscles as strongly all the time anymore, he can of course control his body better, and is also not as exhausted so quickly.
In his last school year, Dan managed to do his homework without needing any breaks, he required less extra time for school tasks and exams, and his school days left him less exhausted. Additionally, Dan’s improved fine motor skills have enabled him to learn to write his name by hand, so that he can now sign things on his own.
4.5.6. Life after school
Since finishing school last year, Dan has shortly been working at a workshop similar to the one Ben is employed in, but has quickly grasped the chance to move to a branch office of his ~ 96 ~ former workplace, so that he is now working fulltime in a post office, arranging letters and postcards, sending out emails, and selling products his colleagues at the workshop create, such as soaps and jewellery. He tells me that, although he enjoys working with the computer a lot, he particularly loves his job’s closeness to other people, as he is talking to new people every day, and can directly be there for others. Although Dan believes that he would have had his happy moments too, had he gone to a special school, he does not want to miss any of the people he has met throughout his school career, and credits being able to work at the post office, which is a job he is more than happy with and that fulfils him, to his education.
In his free time, Dan still enjoys listening and singing along to English music, and often does it right after coming home from work, as it relaxes him. Furthermore, Dan enjoys watching not only English, but also Italian, and even more so Spanish films, as he still enjoys languages greatly, and the possibilities they open up. His mother tells me that he always loves to speak English with an American friend of hers, and also enjoyed using newly learned Spanish words during his stay in Barcelona. She proudly tells me how he likes to use words in real life which he previously only heard on TV or the internet, and openly chats to anyone who might understand him, without any fears of making mistakes. Dan would like to visit different countries, and remains enthusiastic about languages, and fearless in putting his knowledge to the test. He believes to have been born with this self-confidence, although I dare to argue that his upbringing and education must have had some influence on him as well in this regard.
4.6. Evan
4.6.1. Background
Evan is 22 years old and attended a regular suburban primary and secondary school, where he was the only disabled student in each of his classes. Different to my other participants, Evan has graduated secondary school at the age of 18 with a high school diploma, and went on to study at university. He is now studying history full time, and enjoying his education.
Evan has got spastic tetraplegia, like Ben and Dan. However, Evan’s cerebral palsy is more severe than theirs. He is also 100% disabled, but cannot use his hands and legs effectively for most things, needing someone to do almost everything for him, from feeding him, to writing down his mails and such. The few things Evan can do on his own for some time, but still needs assistance with every now and then, include riding his electric wheelchair, and operating his technical devices and aids, such as an audio cassette player and computer with a
~ 97 ~ reading program. Evan is classified under a care level of 6, which means that a carer must be with or at least near him at all times.
Due to the severity of his disability and subsequent loss of control over his body, Evan can neither read nor write effectively, as it takes him a very long time to go from one letter or key to the next. He requires a very large font, in order to be able to see the letters properly, and it represents a huge strain and a big amount of concentration for him to get his finger to hit one specific key. As I have already mentioned in chapter 3, however, he was the only one of my participants, who was able and willing to conduct the entire interview in fluent and eloquent English. The following findings will show how Evan was able to acquire such a high level of English, despite his severe disability.
4.6.2. General education
After attending a special kindergarten, Evan was sent into a regular primary school at the age of 6, which he tells me was no problem and worked well. After that, however, his parents had to fight hard to get him into a regular secondary school, as Evan wanted to continue to learn as much as he possibly could. They were lucky enough to find a secondary school for him, which featured an integration class for the first four years of secondary education. This class was not in the same building as the main school, but located in Evan’s former primary school. This means that during this time he only officially attended the main secondary school, but never actually set foot in it. However, Evan’s parents were simply happy to have found a way for their son to fulfil his maximum potential, and arranged for him to repeat the 4th grade, so that he would be able to fulfil his compulsory 9 years of school education, and then most likely end up in a workshop. Evan was more than content with this plan, and did not expect his education to go any further. He explains:
In Austria it is not normal that a disabled child attends secondary school, so it* was some trouble with providing sufficient assistance. But, luckily, my parents fought for me. My father intervented by* the then secretary of social abilities, and then there were no problems at all. Nowadays, it is easier for disabled children to attend a secondary school with a personal assistant. I was the first pupil in Graz in my area who attended a school like that. [...] So, this was a challenge, but luckily also my teachers and parents were very supportive, I think.
Evan credits the strong support he received from some teachers for his successful completion of all 8 years of secondary school, as he tells me that neither his parents, nor he himself would have thought of him ever graduating, had he not had teachers, who strongly believed in his ability to do so. He recalls the decisive moment, his former history teacher told his mother ~ 98 ~
“’Oh, here I was, thinking that [Evan] [would] graduate anyway.’” This triggered his mother’s belief, that her son might actually be able to do it. She tells me that due to her “bad (Ger.: schlecht)” education, as she describes it, she was unable to evaluate, whether her son had the intellectual potential to get a high school diploma, but was astounded by some teachers’ strong belief in him, and their appeal to let him continue his education, which opened up her eyes to his intelligence. However, not everyone was as supportive of Evan’s plans as his parents and some teachers. He tells me that he was once deemed “unteachable”. “So, yes, there were many doubters, but my parents and I fought very hard to achieve my goal; the goal of graduating. And I did it in 2012, yes.”, he proudly recounts.
4.6.3. Relationship to peers
Despite the lucky ending to Evan’s struggles with achieving an extensive education, his and his parents’ plans of him being integrated among non-disabled students were much less successful. Evan tells me that, although with the help of some teachers most students did eventually remain nice and well-behaved towards him, he has not managed to form any real friendships. The only people he really connected and felt comfortable with were his assistant and certain teachers, who respected and supported him. Evan’s former Geography and English teacher, who, as will become clear, was his absolute favourite and mentor of sorts, and whom I will call Mr Friend, tells me that he did have to intervene a few times and talk to Evan’s peers about treating him with respect. At one point, Evan was even bullied by a male classmate, who would pick on him for various things that come along with his disability. One such example, Evan tells me, is that he often laughs at inappropriate times, because he cannot control his emotions and how they manifest themselves. He regrets having missed the chance to explain this to his peers, before he laughed during a Red Cross presentation that covered death and injury, which made one of his classmates so angry that he hit Evan’s head. Evan also blames this for not having any friends besides his parents, brother, and assistant.
Mr Friend, who has got a disabled niece and has had students with different kinds of disabilities before Evan, tells me in a very frank manner that he does understand the difficulties of teenage people connecting with someone like Evan, as they are still insecure about themselves and very much concerned about their looks, “and then you have a guy, you know, of course, the spit is running down, because he cannot do different*, you know.” Although Mr Friend was always ready to support and defend Evan, he tells me that he also sees the situation from the side of his peers, for whom it was not easy as well. A possible way
~ 99 ~ for Evan to connect with his peers, which failed greatly, was group work. Evan very frankly tells me that he hated it, as he was always sat among the same group of outsiders, who picked on him for being the bigger outsider, which made him furious, as he was academically the best among the group, and could have been of great help to them. Mr Friend was not blind to Evan’s discomfort amongst his peers, and too remembers how troubling group work was in his class:
I talked with him sometimes about how to deal with the others, which is, of course- that is not an English thing, and there was no way to criticise his things, how he was working. He loved to work, you know. It was not criticism, but maybe, let us say, advice, you know, on how to handle situation[s] with the other people the same age, you know, or try to explain [to] him sometimes “Yes, of course, some things are also hard for the others.”, you know. The real situation was actually that kind of teamwork, you know, where he was really suffering sometimes, and whenever I had the chance, then I just talked to him about it, that some people did not want to do him anything bad actually from the same age group, but that it was very, very hard for them to ((know)) how to do it, you know.
Mr Friend tells me that he did witness his interventions with Evan and his peers to have a certain momentum and change the dynamics within the class for the better. Also, soon there were no more questions on why Evan was given extra time for certain things and was not required to read or write like the rest of his classmates. Mr Friend even tells me that Evan’s peers eventually realised that his presence might bring benefits to them as well, as a student with issues in spelling could argue that it would be unfair for him to receive a negative grade as a result of bad spelling, as Evan always received good grades despite not having to prove any knowledge of correct spelling at all. This was very important to Mr Friend, as he did not want his non-disabled students to feel disadvantaged, and fuel further tensions between them and Evan. Another advantage of having Evan in their group took many students some time to discover as well, Mr Friend remembers:
It was very interesting to see, when the first clever students actually found out how much he knew. So, that took a while, you know, because also they had the concept “Okay, we have to accept him. We have to be good.”. And when they found out that he had, of course, so much idea*, as he could spend more time than others on those things, as he, unfortunately, could not spend it on so many of the things young people have to do at that age, you know. So, he knew very much about those things, he was very interested, and it was nice to see, how he kind of grew, when he slowly noticed that [he was] being appreciated for that. That was very nice to watch and getting to see. [...] [Group work] was, of course, always a challenge for him, because he knew, then the other things would come up. Of course, he had a chance to show them directly, how much he could help them, but on the other hand, of course, there was the fear. Always that fear of the reaction of others or that somebody might say “Well, I rather want to go to the other group.”, which are of course the biggest insults that you can have.
~ 100 ~
Although Mr Friend did initially recognise the above mentioned tensions in his class and sometimes let Evan do his tasks alone, as he sensed that he would prefer it to yet another stressful group work situation, he is convinced that his class eventually managed to develop a deep feeling of tolerance, acceptance, and respect for Evan. Unfortunately, however, the student himself recalls that the situation seemed more peaceful to his teachers than it actually was, and his classmates simply got better at pretending to fully accept and tolerate him in front of them. He tells me that he did initially appreciate the chance to show his peers that he actually knew a lot and could be of help to them in a teamwork situation, but eventually had to realise that they would never fully respect him, and regard him as an equal.
This reluctance to include him, Evan believes, was only made worse by the presence of his assistant, as his peers did not see why they should work with him, seeing as Evan had his very own partner to work with anyway. Mr Friend tried to resolve this situation by sending Evan’s assistant out of the classroom during group work, which meant that, as Evan puts it, his peers were “forced” to help him. At first, they often simply rejected, leaving Mr Friend to talk to Evan and do the assignment directly with him. As was mentioned, however, the class eventually learnt to behave better and be more inclusive, which did not mean that Evan felt more comfortable in the presence of his peers, though, as he still felt their resentment, and knew that they mostly only cooperated with him, because they were told to do so. However, Evan never got angry with his classmates or picked a fight. He did stand up for himself a few times, though, and tells me that, although he is not bothered by terms such as disabled or spastic, “[n]owadays, the young generation uses these terms very carelessly”, which meant that he occasionally had to remind his peers, “in a way of talking casually”, as he explains, that Spasti - a German derogatory nickname for spastic - was not a nice term.
It seems, however, that Evan has learnt to live with his peers’ relative rejection of him and his social isolation, and substitute it with his relationship with knowledge and learning. Evan himself does not have any issue with his disability, and is simply glad not to have a mental disability, as he loves knowledge and learning so much. He tells me that being a complete outsider mostly did not bother him, and he connected well with his teachers, assistant, and the respective subject matter in school, and was happy with his situation. Mr Friend explains:
I think friendship, as maybe the two of us would define it, must be different for him, but that is what I think. And he found much of his satisfaction in intellectual things, and he was very proud of it and he loves it, and that is very, very nice, as other things will be close to him. [...] It is too personal, and I do not know actually what is going on in a person like him. How to define friendship, you would not have, but that is just my assumption, as much expectation as ~ 101 ~
someone [else], as you have never experienced [it]. So, you do not know that much, also, what you maybe miss out [on]. You have only experienced it probably, the closeness to you parents, to your family, and people in a similar situation, but that friendship with someone, who is absolutely healthy is something, which is, I think, very hard to get. But he kind of, and that was nice to see, that a human being can kind of substitute it with a lot of the mental things. That gave him a lot of happiness. He was so happy when he knew something, could discuss about it. As, when somebody else falls in love, you know. So, but I think, it was a kind of substitution, I do not know, how it works in the long run, but it must work somehow.
And it seems to work still, as Evan tells me that he is very happy with his life at university, and also loves looking back at his school time and talking about the great supporters he had amongst the teachers, but also the doubters, who both gave him a confidence boost. The first made him believe that he was able to achieve more than he ever thought he would, while the latter made him want to prove it to other people as well. He tells me about his delight upon overhearing the chairman of his graduation panel surprisedly telling the school’s headmaster that he was able to understand Evan. It were moments like this one that gave Evan pure joy and confidence; witnessing how he proved other people’s expectations of him wrong, and making them realise what he was actually capable of and how much he knew. The following findings will show, how Evan’s language teachers, in particular Mr Friend, managed to get the most out of Evan, and turn him into the confident and competent young man he is today.
4.6.4. Language education
Since Evan has always had a great love for languages, he attended the language branch of his school, which meant that he studied a total of three foreign languages, including English, Italian, and French, which he even graduated in. After finishing his four years in the integration class, Evan’s only option, in order to graduate, was to finish school in the main building, which was a transition not as smooth as he would have wished for it to be. Right from the start, many teachers were very much against Evan being included in the regular lessons, as they doubted that he would be able to deliver the same performance, and thus have what it takes to attain a positive grade in a fair manner. Mr Friend tells me that, before ever meeting Evan, he had heard people arguing about his ability to learn a foreign language, which many believed to be impossible due to his disability. Furthermore, he also believes some of Evan’s own language teachers to have underestimated him and not given him the chance to exhibit his knowledge in their lessons. “He is a very, very clever young man, you know, but everything was just overshadowed by the physical appearance.”, he explains.
~ 102 ~
Evan even tells me that, at one point, his former Italian teacher told his mother that she would be unable to grade him, as she could not understand what he was saying. When his mother furiously retorted with the fact that for the previous 5 years of secondary school, it had never been an issue for Evan’s teachers to understand him, the arrangement was made that Evan’s assistant, who understood enough Italian to do the job, would translate for him during exams and also lessons, if necessary. Evan proudly tells me that after a few years this was not necessary anymore, as his Italian teacher had learnt to understand him. “But this example shows you that some teachers are not so open-minded to students with disabilities. Especially in foreign languages it is a difficult job to do.”, he explains. Consequently, Evan’s mother was not pleased when he decided that he wanted to learn yet another language, and advised him not to choose French, as she worried, that he might face rejection again. However, Evan was lucky with his French teacher, and had an understanding man, who was willing to see his talent for languages, and motivated him not to give up on his love for them. He even spent some extra hours tutoring Evan alone after school, in order to improve his pronunciation, and allow for him to deliver a better performance during his graduation.
Evan was not as happy with his first English teacher as he was with Mr Friend, whom he only had in English for his final two years (in an optional subject called Contemporary English, which focussed heavily on conversation), but in a further three years of Geography, which was taught in English as well, due to Evan attending the language branch of his school. Yet, he remembers English itself to have been a very positive language learning experience, and he mostly had to fight less prejudices from the teachers, in order to be allowed to show his potential. He recalls how having Mr Friend in Geography, and him getting to experience Evan’s level of English and subsequently telling his student how good he was, motivated him to participate more actively in his English lessons, and raise his hand more often to make a contribution. He tells me that “especially with speaking difficulty this is very important, to build self-confidence in spite of your speaking and your verbally* difficulty, but, yes, [Mr Friend] had the most impact for* me." Despite Evan’s speech impairment, the confidence in his ability to speak was vital for him to pass secondary school, as his disability’s severity leaves him with no other method of conveying his knowledge. As was mentioned, Evan cannot read or write in a manner that allows him to use his own reading and writing abilities for academic purposes, as he takes way too long for each, and both are highly exhausting to his body. Mr Friend tells me that he himself saw absolutely no issue with Evan not being able
~ 103 ~ to contribute any written material in his English and Geography classes, as Evan had other ways to show his competence and intellect. The teacher explains:
It was very obvious to me, how much he understood and how well he could build structures, and people say that you cannot build structures with certain kind[s] of disabilities, which is just nonsense, because he does not have any mental disability; obviously not, you know, but it is just a physical one, and of course then it is hard to word it, but if you cannot put it into writing, I think it is 15th century, if some people then think you are dumb, you know. You just cannot put it on* your muscles. I mean, I am getting sometimes very mad*, when I see that. That cannot be our times. It sounds like Middle Ages. [laughs]
Luckily for Evan, the school’s headmaster thought the same way and saw no problem in letting him prove his knowledge to the best of his own abilities, without him ever having to read or write anything. Mr Friend proudly tells me that he would have full support from his principal, who agreed with him that “it is the person [that counts]” before any law. “And we do everything we can for that person. [...] And we have to be fair. Well, what is fair? It is not fair, what has happened to him.” Mr Friend doubts that Evan’s situation would have been as easy to handle in every school, but is glad about his principal’s open-mindedness, which eventually meant that Evan was able to pass all of his exams orally, studying for them by having his parents read out the respective subject matter to him, or listening to relevant tapes or online videos, and cooperate in class only orally. During lessons, Evan’s assistant would fill out things in the book for him and write down all the necessary notes for Evan, which his parents would then go through with him at home, if he needed them to, which, his mother tells me, usually was not the case anyway, as Evan was able to remember very easily everything that had been said in class. Mr Friend emphasises this as well, telling me that Evan did not actually need his assistant during lessons, as he was “always, I would say, 110% attentive with listening and wanting to know many things.”
It must be mentioned, however, and can also be seen in the short extract from my conversation with Evan in the appendices, that he always did and still does have a weakness in English, and language in general, actually, which is grammar. He is very much aware of the fact that this might be due to his lack of reading and writing, but has learnt to accept his weak point, while still working on improving his grammar. Evan recalls, though, how Mr Friend told him at the end of his school career: “’You may be not the greatest grammatical genius, but you have the most important thing: vocabulary knowledge. And this is all you need.’” This again made Evan less afraid of speaking, despite knowing that he did make several grammar mistakes.
~ 104 ~
4.6.4.1. Speech
One thing Evan believes to have helped him, not only with acquiring a more extensive vocabulary, but also with being able to talk quicker and more clearly, was the amount of music that was included in his English lessons. In singing along to fast lyrics, Evan was able to train his speaking pace, rhythm, intonation, and articulation in a casual way. He was not always able to follow the songs’ paces, but tells me that he got better with time. In elementary school, he recalls being “forced” to translate a song’s lyrics from English to German, but did not enjoy it, as he did not yet have enough confidence in his English. Nowadays, and also in secondary school, Evan very much enjoys every opportunity he gets to test his language competence and improve it. He also asks me to correct any mistakes I detect throughout our interview, also pronunciation-wise, so that he can learn and practise some more.
Although Evan’s professional speech therapy only went from kindergarten to elementary school, and his assistant did not do any speaking exercises with him, Mr Friend would often correct him, and give him tips on how to improve his pronunciation, which Evan was not only thankful for, but actually asked for. Mr Friend tells me that he was never worried about insulting Evan by talking directly about his speech impairment or correcting certain mistakes he made in his pronunciation. “I knew that he would appreciate it. He liked it, and you said something ‘Oh, try it liked this.’, you know.”, he recalls. Two of the sounds, I have discovered throughout our interview, Evan cannot produce are the [ʧ]- and the [ʤ]-sound. He has, however, learnt to replace them with a [ts]-sound, which does no harm to his intelligibility, as long as the listener is aware of what he is doing. Contrary to Dan, Evan struggles with the English way of producing the [r]-sound on the alveolar ridge, and mostly produces it on the uvula, which is the German way of doing it. (“Stimmloser velarer Plosiv,” 2015) Only when uttering words that feature an [r]-sound between two vowels, such as the word orally, he tries to pronounce an English [r] first, takes several attempts, and then substitutes the [r]-sound with a [w]-sound. Another thing I have noticed, and Evan also talked to me about directly as a conscious technique he is using, is that, due to his extensive vocabulary, when struggling to produce a certain word, he can often switch to a synonym that he can pronounce more easily. An example of this can be found in our interview extract in the appendices, where Evan wants to tell me that his class was split up, but struggles to get past the [sp]-sound, and eventually tells me that his class was divided into two groups.
~ 105 ~
Similar to what Dan has already told me, Evan too chooses to speak Standard German, as well as English, in order to be better understood. He tells me that he can speak and understand many forms of German and fewer forms of English dialect, but chooses to use the standard language, especially when talking to people who do not know him well and still have to get used to his way of speaking. Evan recalls that it was never an issue for his teachers and peers to understand him, if they actually wanted to do so, as he often felt that many did not even bother trying to understand and connect with him. One thing Evan admits does make him very hard to be understood even by people who know him well, and also diminishes his language competence, is nervousness. He explains: “When I am nervous, it is horrible for other persons to follow me. (( )) and my concentration level is down. [...] This is another problem, also really difficult in English, I remember a lot, and when talking I am forgetting the terms.” This did, however, not stop him from confronting his fears of talking even for longer periods of time in front of his peers and do presentations. Mr Friend explains that presentations were never obligatory, but Evan wanted to do them simply because he enjoyed elaborating subject matters, and presenting his knowledge to other people. Although Evan admits that it did bother him that his peers always looked bored, started whispering, and used every chance they could get to interrupt him when he was contributing a comment in class, he enjoyed being given the time of a presentation to talk to them, and tried to speak as quickly and clearly as he could, so that they would not lose patience with him.
4.6.5. Graduation
As Evan is the only one of my participants to have graduated high school with a diploma, I deemed it interesting to take a closer look at how exactly his graduation was conducted, and how, despite his severe disability, he managed to convey his knowledge to his entire graduation panel. Evan tells me that he was allowed to do all of his exams orally, and did not have to read or write at all. Mr Friend recalls that this arrangement was no issue at all regarding principles, and the school’s headmaster was on his side, and supportive of Evan. There were, however, some teachers, who were very much against changing things for Evan and introducing special arrangements for him. The English teacher tells me:
I will never forget one, when our principal really- He got so mad, as I had never seen him before*, when one teacher- not one of the most- well, more or less claimed “Why should we always do different rules and different things, just because of one?” And that is when our headmaster, and I admire him very much for it, absolutely lost control. (( )) on a very, very emotional basis, and I think that was very helpful, you know, just to make it clear that we are not- And he is actually- He has studied law, you know. He is also- So, he is from that legal ~ 106 ~
((department)), that he says “Well, I do not care.”, you know. “I will support you with everything, as long as you can support the kid.”, you know. And nobody will care if it is Matura [i.e., graduation] or not, but for him it is more than essential, you know, because he can only live his intellectual life. He cannot live that physical life, like others do, you know. So that was a very, very emotional situation, which shocked some people, you know. But it shocked me, for example, what a colleague could really say. I would not have thought that that is possible, that you can really say in our job “Well, we have certain rules and why shall we do everything special?” Or just copy things twice or maybe go into another room for another lesson. Of course, it makes the situation harder, but it makes the situation nicer, if you see the outcome, you know. So, I think it is just ridiculous, but that is absolutely the minority, I would say. Everybody accepted it. Everybody tried very, very hard, you know, and there was the support from everyone, you know, actually, on the hierarchy. And there are a**holes in our job, you know [chuckles], but they are only a very small minority.
Eventually, there were no issues with letting Evan graduate and do it in his own way. He tells me that he was allowed to go into a separate room with one teacher, who was not a member of the graduation panel, supervising him. There, he would listen to the exam questions, which his teachers had spoken onto an iPad, speak his answers onto the tablet for the ‘written’ exams, and think about his subsequent answers for the actual oral exams. As he cannot write, Evan was not able to take any notes, and had to structure his thoughts purely in his head. Mr Friend made it clear to him that he could take as much time as he needed for his exams and preparations, as there “is no general rule in Styria for any case of limitation for the time required”, Evan explains. Much sooner than expected, though, he had managed to finish his written exams and be ready for his exam interviews. Eventually, Evan managed to complete all of his 7 oral exams in the morning, although he was scheduled to do them throughout the day, which pleasantly surprised everyone, including Evan himself.
In summary, it can be said that, although Evan certainly never managed to fully become an equal member of his group of classmates, and always felt like an outsider, he managed to find fulfilment in the purely academic part of school, particularly his language education, and learnt to ignore the negativity he received from his peers, focus on his strengths, and go his own way, so that he would be able to continue learning more and more for as long as possible. He tells me with a smile: “I had a very happy school career.”
4.6.6. Life after school
Evan’s social standing has not changed from the way it was during his school career, and he still finds it hard to connect with people and form friendships, as he gets very nervous in front of new people, fearing that he might do something wrong and forever ruin their impression of him, which subsequently makes it all the harder for him to talk to them, as his nerves ~ 107 ~ intervene with his ability to speak his clearest. Evan’s “circle”, as he calls it, still consists only of his parents, brother, and assistant. However, another thing that fortunately also has not changed is Evan’s love for English. Although he is now studying history, he still loves languages in general and English in particular, and tells me that he is constantly trying to improve his language proficiency by watching YouTube videos, English films and shows, and the British Upper House of Parliament, which, he admits with a chuckle, most people find weird, but “has improved my English considerably”. He explains: “Luckily, I am a good learner by hearing stuff. Unfortunately, the grammatical side suffers, because I cannot read [...], but this is for me a good way to learn new words.”
Evan tells me that he did not think of improving his English in this way all by himself, as Mr Friend appealed to his students to watch films in English, translate song lyrics, and do similar things. “He encouraged us to do [things] always in English.”, Evan tells me. This and the encouragement Evan received from Mr Friend, who so firmly believed in him, motivated Evan to continue his language learning career, and further improve. Mr Friend explains that this is basically all he is looking to achieve with his students, as he sees his main job in getting young learners interested, and motivated to learn. Although he does admit that feedback must always be honest and not driven by pity, he believes it to be vital for learner motivation. The English teacher tells me that he quickly understood how smart Evan was, and wanted to further his potential:
I do not have to tell you about the classical thing of integration, inclusion. I am personally 100% sure that this is the correct way for people to do it, and I think I found out very quickly, because you see it in the eyes. You see in the reaction, how much somebody understands, but I think it involves a little bit, not very much, of, I would say, feeling for the situation, that you see, or, I would say, also willingness to see. Some people seem not to have that willingness.
It is clear that not every disabled person has got the intellectual potential to graduate high school and attend university. But Evan has proven all of his doubters, who would not believe in his ability to gain the same amount of knowledge as his non-disabled peers, wrong, by acquiring a vast knowledge of facts and figures, as well as linguistic competences. He recounts the time his father and him were in Turkey, and he had to help him out, as his father was not able to communicate in English. Evan tells me that it took a long time for the Turkish man to realise that the disabled boy was in fact talking for his father, and that the man should listen and respond to him instead, but the situation made Evan very proud of his abilities and also his confidence to assert himself and make the unknown man listen to him. He fully credits this ability to talk English fluently, but most of all his own belief in his ability to do so ~ 108 ~ to Mr Friend’s open-mindedness and vocal belief in him, as this is what made Evan continue to study the language and become better with time. “Open minds we need to succeed as disabled people, I think, in school.”, he declares.
4.7. Fiona
4.7.1. Background
Fiona is 13 years old and currently attending the 4th grade of a rural NMS. She will be graduating school this year and then, hopefully, start an apprenticeship. What exactly she would like to do, Fiona does not know yet.
Fiona has got spastic hemiplegia, meaning that only one half of her body is affected by spasticity. She can walk with difficulty, but without the help of any aids, leaving her with a disability degree of 60%, and a care level of only 1, meaning that she only needs 65 hours of assistance per month, as she can do most things on her own.
Seeing as only one half of Fiona’s body is spastic, she was able to learn how to write, and can also read at a fairly quick pace, compared to my other participants. Fiona’s speaking is only mildly affected by her disability, and she can easily be understood. However, the difference between Fiona and the rest of my participants is that she has got a learning disability, which is also a result of her cerebral palsy, and interferes much more with her academic life than the physical effects of the disability. The following findings will show how well Fiona has been able to cope in mainstream education, despite her physical and learning disability.
4.7.2. General education
Although Fiona is attending a regular NMS, which intends to teach academically weak students in the same class as academically strong ones, she is taught in a separate group in the main three subjects, just like Dan. Her special education teacher and assistant, whom I will call Mrs Kind, tells me that it simply made no sense to include the students with learning disabilities in the regular class, as they need much more time and thorough explaining, in order to understand new subject matter, and also cannot go as deep as the other students. She tells me about Fiona:
Es macht einfach keinen Sinn, sie in die reguläre Stunde zu schicken, weil sie nur überfordert sein wird, und dann lernt sie im Endeffekt gar nichts, verstehen Sie? Die anderen sind dann abgelenkt, weil sie vielleicht ständig nachfragt, oder zu stören anfängt, weil sie schon lange
~ 109 ~
raus ist, und dann lernt keiner etwas; die Guten nicht und die Schlechteren erst recht nicht. [...] Das ist auch gut in dieser Gruppe, dass sie den Unterschied zwischen ihnen und den guten Schülern nicht so stark merken. Sie merken nicht, um wie viel sie den anderen hinterherhinken und haben in ihrer eigenen Gruppe ihre eigenen Erfolgserlebnisse und können da auch einmal herausstechen und die Beste sein.
It simply makes no sense to send her into the regular lesson, because she will only be stressed, and then she ultimately learns nothing at all, you know what I mean? The other ones are then distracted, because she might constantly ask something, or start disturbing the lesson, because she has long been out of it, and then nobody learns anything; not the good ones and especially not the worse ones. [...] That is a good thing in this group, that they do not notice the difference between them and the good students so strongly. They do not realise how much they lag behind the others, and have got their own moments of success in their own group, and can stand out there and be the best every now and then.
Consequently, I do not sit in on the lessons Fiona has got with her entire class, but observe her being taught by a regular English teacher, whom I will call Mrs Johnson, in a group of nine female students, who have all got special educational needs, and follow a different curriculum in the main subjects, which is the so called ASO-Lehrplan (i.e., Lehrplan der Allgemeinen Sonderschule [Special Education Curriculum]). Mrs Johnson tells me that, in accordance with it, her English lessons cover less vocabulary and not all tenses. She uses the students’ mother tongue more often, focuses more on speaking and listening than reading and writing, and generally includes more pictures in everything. The teacher reports that Fiona has no issues with following this curriculum, and always gets good grades in English.
4.7.3. Relationship to peers
Fiona has been attending regular schools for all of her life, and has known most of her current peers since kindergarten. Her teachers tell me that, integration-wise, there has never been a problem with Fiona’s classmates accepting her as an equal member of the group and connecting with her. Fiona herself tells me that she is very lucky to have made real friends in her class, who have got her back whenever she needs it, which she does occasionally, as other students, who have not grown up with her and still only know her from limping through the school building, and thus looking very different to most of the other students, do occasionally pick on her. Fiona tells me about a particularly upsetting incident, when a girl from a different class did not want her to take part in a school performance that involved dancing, as she feared that Fiona would ruin it. She recalls how the girl phoned her to tell her not to participate, which upset her, although she did understand the girl’s desire for the dance to be perfect. However, Fiona’s friends intervened and defended her, so that she did eventually take part in the dance. Luckily, Fiona has got little to do with said girl and spends all of her time at ~ 110 ~ school with her best friends from her own class, who seem to enjoy her company and have fun with her. The extra group of nine girls seems to be getting along splendidly too. When I talk to different teachers, they confirm my observation, telling me that Fiona has always gone to school and even kindergarten with the same group of children. Thus, they all know each other very well, and do not seem to pay any attention to Fiona’s physical differences. Mrs Kind further explains that the intellectual difference is also no issue, due to the fact that the students are split up, so that the strong ones do not notice the weak ones’ performance and vice versa. Since Fiona’s mental disability only affects her learning ability and does not manifest itself in her general conduct, Mrs Kind explains that her classmates have never had reason to laugh at her or disrespect her for her intellectual abilities.
Although in the five lessons I am allowed to observe her I am only given a short glimpse into Fiona’s everyday school life, I do believe what Mrs Kind and some of her colleagues tell me, as I get the same perception during lessons and also breaks, when Fiona does not only play with her friends from the extra group, but meets up with different ones from the main class as well. It is evident, however, that she feels more comfortable with girls and, like the rest of her group of girlfriends, seems uncertain about how to handle boys, which is not unusual at the age of 13. It does, however, create some division in Fiona’s extra group, as one girl in particular, whom I will call Sophia, seems to be a few steps further in her relationship with boys. Mrs Kind tells me that Sophia does not really want to be integrated too well in the group, and sometimes struggles with being associated with them, as she would like to be seen as more mature and cooler. It can be seen upon first glimpse, that Sophia and the rest of her group would not typically be friends, as they all dress very casually, without any attempt to make a statement, while Sophia has somewhat of a punk appearance and wears make-up, which no other girl in her group does. However, despite Sophia and the rest of her group not being bosom buddies, they do get along and cooperate during lessons, and simply go their separate ways during breaks, which very obviously does not have anything to do with Fiona’s disability, but simply Sophia’s interests being different to those of her female peers. When Fiona and her friends are then running around in the school yard, nobody seems to pay attention to the way Fiona walks and runs. Although she herself tells me that certain students from other classes sometimes pick on her for how she walks, she can always rely on her friends to defend her, which gives her great pride and confidence.
Having a lot of experience with disabled students, and having had a male student with severe cerebral palsy only up until the previous year, who had grown up with his classmates since ~ 111 ~ kindergarten, and whose integration among his peers worked perfectly too, Mrs Kind explains that people who respect and understand Fiona is all she needs in order to feel comfortable and included in school. She tells me that Fiona once had a teacher in her arts and crafts lessons, who would not understand why she was unable to weave well and gave her bad grades, when really Fiona struggles with spatial perception, which made it hard for her to understand the concept of weaving. In summary, however, it can be said that Fiona’s teachers seem to be doing everything right. They recognise and further her individual strengths, and have managed to give her confidence in her abilities. She is happy with her numerous friends, and enjoys her time at school, as her teachers push and motivate her, but do not ask the impossible, and know where her limits are.
4.7.4. Language education
As mentioned before, in the main subjects Fiona is taught in a small, separate group of students with learning and also language disabilities, although it should be mentioned that Fiona herself does not have a diagnosed language disability. Minor subjects, such as Biology and Geography, are taught to the whole class, with Mrs Kind offering further explanation and assistance to the students with learning difficulties, if needed. Although Mrs Kind teaches the extra group in German and Mathematics, English lessons are mostly held by Mrs Johnson, as Mrs Kind does not feel confident enough in her English. She is, however, always present to help if it is needed. The atmosphere in the small group is very relaxed and friendly. The five girls are sitting in a circle around one big desk. Fiona and her best friend are sitting next to each other and smiling a lot. Mrs Johnson tells me that these lessons are always very easygoing and little disciplining is needed from her side, as her girls, as she calls them, are all well-behaved and do what is asked of them to the best of their abilities. She does tell me, however, that especially Fiona’s performance can depend on whether or not her two best friends are at school, as she is in fact better concentrated and more attentive when they are around.
English lessons always start with the oral repetition of what was discussed and worked on in the previous lesson. All of the girls listen to the teacher and participate right away. When I ask Mrs Johnson, whether this is always the case, or whether it might be because I am watching, she tells me that the girls are mostly like that, because they all enjoy English very much, and have fun with it. In order to keep up their motivation, boost their language confidence, and keep her students participating actively in class and displaying their knowledge, Mrs Johnson
~ 112 ~ recognises and loudly praises whatever her girls do correctly or show an effort in. Although she does try to motivate them to use their second language as much as possible, Mrs Johnson uses German almost as much as English, as she translates everything she says in English into German, or asks the students what a certain German expression means in English. She tells me that this is a technique which is frowned upon by many teachers nowadays, but which she likes to use with her group, as being able to hold onto a pre-existing language structure and knowledge helps students with learning and language disabilities, who are already struggling with their mother tongue, and cannot think in English.
In the first lesson I sit in on, the students practise the difference between the past and the present tense, which they have talked about many times before, but still struggle to remember when talking. Mrs Johnson tells me that grammar is certainly a weak point for Fiona, as she actually has got rather good memory and remembers words very well, but struggles to understand new structures. The teacher explains:
All you can do is just practise and practise the same thing over and over again, but she will always make lots of grammar mistakes, because that is just her big weakness, and she just does not quite get it. But she has got a really good vocabulary, and that is even more important when talking, so I am very happy about that.
There is in fact a strong focus on the repetition of vocabulary in Mrs Johnson’s lessons, which also stems from the fact that most of the girls in her class find it hard to remember words. The lessons I sit in on cover different word classes (i.e., nouns, verbs, adjectives) to do with animals. For example, dog – black – to bark, lion – dangerous – to roar. In order to strengthen certain terms in her students’ minds, Mrs Johnson brainstorms all the terms they already know, and writes them down on the board.
Different to the former belief that illustrations stifle cerebral palsied children’s imagination, research has shown that they are important guides for students with cerebral palsy, and help them remember words and stories. (see section 2.3.5.5. and Bläsig, 1982) Mrs Johnson seems to be aware of this fact, and uses many forms of illustration in combination with the learning of new words and expressions. For example, for reading or writing exercises students are always given worksheets that contain pictures of the animals in question. When writing new words on the board, Mrs Johnson adds little drawings that indicate what the respective words stand for, always engaging her students in the process of deciding on the specific drawings. Some of these drawings can be seen in the illustration below, in which I have traced examples I have seen in class. The language books used by Mrs Kind pursue the same strategy, and ~ 113 ~ contain a large amount of illustrations. See, for example, Gute Sätze, volumes 1 to 3, by Elstner and Miestinger. (2006) They also focus primarily on expanding children’s vocabulary.
Figure 9: Terms and illustrations
During speaking and listening exercises, the same strategy is applied, and expressions are always learnt in a very visual and vivid way. Mrs Johnson, for example, determines certain gestures and grimaces that accompany each word, as it is being spoken by a student or herself. She always encourages her students to come forth with suggestions for what gesture or grimace might be best suited for which animal, and the girls seem to enjoy the chance to be creative. As with any other activity, Fiona is just as involved in the lively battle of expressions as her peers. When saying the word bird, for example, everyone then imitates the flapping of its wings. When saying the word elephant, they imitate its trunk by holding their noses with their left hand and letting their right arm hang through the circle the left arm is creating. After a couple of lessons, the students are able to immediately recognise the word their teacher is looking for when she is only making the respective gesture or facial expression. Thus, she does not have to put the words into her students’ mouths anymore. They remember the previously learnt terms via their associations with mental images of them.
Although Mrs Johnson’s techniques eventually help every student remember most of the terms, it becomes clear to me that Fiona does in fact remember words quicker and more easily than her friends. This is a quality that has proven to be beneficial to her standing in the main class too, as her peers are able to recognise her strength in the other subjects, where learning facts is often required. Her good memory gives Fiona a great sense of pride, and shows her that she can actively contribute something to all of her lessons, which in turn also makes it
~ 114 ~ easier for her to accept the mistakes she makes, and the issues she has often got with learning new things. Her friends in the extra group do not seem to be jealous of Fiona’s strength, and have accepted her as the best amongst them when it comes to remembering vocabulary.
Although Fiona finds it easy to remember words, she is not the quickest one to fill out the worksheets Mrs Johnson gives to her students in order to strengthen their vocabulary and also train their reading and writing skills. Although officially only one half of Fiona’s body is palsied, she generally finds it harder than her peers to conduct fine motor movements and write quickly, as well as intelligibly. Fiona is also not the quickest reader, as she too struggles a little to focus her eyes on one specific point. However, as her English classmates need more time than probably most non-disabled students their age would to understand and conduct their tasks as well, it is no issue for Fiona to have the time she needs to finish her worksheets, and her peers rarely have to wait for her.
In general, Mrs Johnson spends less time on having her group fill out worksheets than she does on talking with them, and having them participate actively and vocally in class. “They are quickly exhausted and lose concentration when they have to work quietly on a sheet. So, these tasks are always fairly short, and then we talk again, so that they stay attentive and focussed.”, she tells me. If she feels like some of her girls are getting bored and their attention is fading, Mrs Johnson has them come out to the board to write down certain words they are currently talking about, which, she tells me, is not only a good way to change things up during a lesson, but also boosts the students’ blood flow, furthering their concentration. As Fiona often raises her hand to answer her teacher’s questions, it never takes long for it to be her turn to come to the board. When she leaves her desk, some other girls have to help her and rearrange some chairs, in order to enable Fiona to walk between them. As with what I have seen during breaks, Fiona’s peers again seem completely unfazed by her peculiar walk and the fact that she needs their help. The group seems to work together as one team very neatly, and even Sophia is nice to Fiona during their shared lessons.
During reading exercises, the students first have to tick statements about animals, such as “The blue cat barks.” as true or false, and then connect pictures of animals with their descriptions. This proves to be a challenge for Fiona, not only in terms of reading, but especially in terms of fine motor skills. As her peers need more time with reading too, I can see that she starts her exercises at about the same time as them, but takes longer to focus her hand enough to be able to tick the right square, and draw the correct connection without
~ 115 ~ accidently moving the line towards the wrong description. When the class is doing a writing exercise, its smallness proves to be handy, as Mrs Johnson has to correct many spelling mistakes, also by Fiona, who struggles greatly with the English spelling, and tells me that, similar to Dan, she finds its silent letters frustrating.
When I ask Fiona, if she has ever had an issue with being disabled, she refers to her motoric difficulty with writing as the only thing that annoys her. Different to my other participants, however, Fiona finds it easier to write by hand, and tells me that she had to use a computer a few times, because her teachers wanted to see how she would fare, and whether it would be easier for her to write in this way, but states that she has always hated writing on a keyboard, as it takes her a long time to find each letter, and further effort to hit only the one specific key she needs. Writing by hand is, however, also not always easy, she tells me:
Wenn ich schneller schreiben will, wird es nur schlimmer. Dann verschreibe ich mich die ganze Zeit nur, und dann komme ich gar nicht mit, und dann höre ich dann einfach auf und sage der [Mrs Kind], dass es zu schnell ist.
When I want to write quicker, it only becomes worse. Then I constantly make mistakes, and then I cannot keep up at all, and then I just stop and tell [Mrs Kind] that it is too fast.
Thanks to Fiona having such good friends, Mrs Kind has, however, never needed to write anything down for her, as Fiona’s classmates are always ready to help her out by letting her borrow their material. Another thing they have always accepted is that Fiona has to sit in the middle of the first or second row, in order to get a close and straight look at the board, as she has also got some issues with her sight.
4.7.4.1. Speech
During speaking exercises, Mrs Johnson also trains her students’ pronunciation, which is important for Fiona, as she does have a slight speech impairment, due to her disability. For example, she sometimes struggles to produce long vowel sounds, as in the word sheep, and will pronounce it as a ship, if she is unfocused. Another issue Fiona, but also some of her peers have got, is that they often fail to distinguish between the voiced plosives d and b, and their unvoiced, aspirated counterparts t and p, which is, however, something the Styrian dialect in general does not do, leading to some students having issues with doing it in English. Mrs Johnson tries to avoid such mistakes from happening by not only pronouncing the words correctly for her students to hear, and then having them repeat them until she is happy with their pronunciation, but also by conducting a variety of interactive tasks with them that all
~ 116 ~ train their pronunciation, and also help them remember new vocabulary. For example, whenever a new word is written on the board, Mrs Johnson says it loudly for the class to hear its correct pronunciation, before the entire group repeats it in chorus. The same thing is done with fixed phrases that further help the girls develop a feeling of how to use certain words in a sentence, and combine them with others. Mrs Johnson will say “The dangerous lion roars.”, which the entire class repeats. She will then ask her girls to translate the sentence into German, to make sure that everyone understands what they are saying, then will ask individual students to repeat the sentence after her, before the entire group chimes in again. There is a high number of repetitions in every task and also Mrs Johnson’s instructions and explanations, as she tells me that it is harder for most of her girls to remember things, but especially also to understand English sentence structures. “They have to hear it again and again, to get a kind of feeling for how it should sound when it is correct, you know.”, she explains.
In order to get her students to repeat phrases multiple times without it seeming forced, Mrs Johnson often includes song lyrics and rhymes in her lessons, which she tries to learn by heart with the class. The following rhyme is studied while I am sitting in on their English lessons.
Let’s begin with 1, the bear sleeps in the sun. 2 and 3, the parrot sits in the tree. 4 and 5, let’s watch the penguins dive. Et cetera.
The students are given a worksheet with the rhyme on it, but the underlined words are missing. They must find the respective illustrations from 1 to 10 on a picture of a zoo lying between them, and discover what the missing words are, which requires vocabulary knowledge and musical thinking, as they know that each missing word must rhyme with the previous number in the line. This task again shows how important Mrs Johnson deems the combination of new words with visual stimuli to help her girls remember them. After the entire rhyme is completed, several repetitions of it are done in unison, while the group is still allowed to look at the sheet, before eventually having to turn it over, which everyone does without cheating. Then, Mrs Johnson even asks them to close their eyes while going through the lines, telling me that she wants them to focus purely on their pronunciation, and not be distracted by what they see on the sheet before them, and how they think it might be pronounced. A further exercise the teacher likes to do is ask her students to say the sentences very loudly and then very silently, switching this up repeatedly, so that they develop a feeling
~ 117 ~ for vocalisation, which, as we have discovered in section 2.3.4.2., is something cerebral palsied people may also struggle with. The final repetitions have to be done by the students alone, without their teacher helping them by joining in.
In addition to the large amount of speaking Mrs Johnson does in her English lessons, Mrs Kind also trains Fiona’s speech by practising the formation of certain sounds, that is, specific letters or entire words, in a playful manner. She has been using Monschein’s Spiele zur Sprachförderung Band 1 & 2 (1997, 1998) for many years and is very content with the books, as they are crammed with exercises of all sorts for students with language and speech difficulties, as well as ones who struggle with equilibrium and spatial perception, like Fiona does too, due to her cerebral palsy. One exercise that Mrs Kind has already done with her, in order to improve her differentiation of the letters t and d, consists of imitating boxing movements, and pronouncing the letter t whenever one hits very hard, and the letter d when one hits lightly. (Monschein, 1997) Such an exercise again gives Fiona a visual image, as well as a body sensation, along with what she is learning, which helps her remember and understand the difference between t and d. Another exercise Mrs Kind has used to practise Fiona’s [r]-sounds in German, as well as her spatial perception, is one where Fiona rolls different sized balls into a goal placed at the other end of the table, always accompanying the ball’s movement with a long [r]-sound. (Monschein, 1997) This exercise trains her spatial perception, because she must hit a specific target, and must learn to aim more precisely the larger the ball she is using gets. It trains her pronunciation of the [r]-sound, because Fiona must try to produce it and hold it for as long as the ball is rolling.
4.8. Greg
4.8.1. Background
Greg is 10 years old and currently attending the 4th grade of a rural regular elementary school. After finishing it this year, he will continue his school education in a near-by NMS, which, his mother tells me, was no trouble getting him a place in at all.
Greg has got spastic diplegia and is hypotonous, which means that, similar to Chris, his muscle tone is lower than normal, and his legs are more affected than his arms. However, his disability is generally less severe than Chris’. Greg is 70% disabled, meaning that he cannot walk on his own, but manages to go short distances with crutches and another person holding him for extra support and security. For longer distances, however, he depends on a
~ 118 ~ wheelchair, albeit not an electric one, like most of my other participants, as Greg can use his hands effectively enough to operate a regular wheelchair.
Due to the lower degree of Greg’s cerebral palsy, he has learnt to read and write at an age- appropriate pace, although he does tire more easily than his non-disabled peers. His speech is only mildly affected, and he can easily be understood.
4.8.2. General education and relationship to peers
Greg’s mother tells me that there were no issues with getting her son into a mainstream school, so that he is now visiting a regular primary school class of 17 students, whom he has mostly known since kindergarten. His assistant, whom I will call Anna, tells me that they all get along great, and there were never any issues with Greg being a little different and not being able to run like all of his friends, as they managed to find other ways of including him; for example, by making him the referee in games that he cannot participate in, which is a role Greg tells me he enjoys and does not feel cast out by.
His English teacher, whom I will call Mr Twist, tells me that, apart from Greg’s front row seat, the general seating arrangements in class change every day, so that every student learns to be able to cooperate with each of their peers, which the teacher says works perfectly, and seems to have done wonders to the atmosphere in and outside of class, as all of the students appear to get on splendidly, and I am not able to detect any group formations during the breaks. In the course of my observations, Greg is sat next to different boys and girls, whom he seems to be getting along with equally well.
Greg mostly only needs Anna outside of class, in order to go to the toilet, take his jacket off or put it on, and similar things. She also helps him walk with his crutches, which he uses during and in between lessons. During longer breaks, Greg prefers to be in his wheelchair, as it makes him more independent from Anna, so that he can play with his friends alone in the school building or yard. It is wonderful to see how relaxed and unafraid they are in their interaction with him. Despite Greg’s physical disability, his peers do not seem to be afraid to nudge him in playful banter, or ride his wheelchair in a turbulent manner. „Ich mag das, wenn sie so wild mit mir fahren. Da ist noch nie etwas passiert. [Der Rollstuhl] hält viel aus. [I like it, when they drive with me so wildly. Nothing has ever happened. [The wheelchair] can take a lot.]”, he tells me grinning. Especially Greg’s brother seems to be the class clown, always looking to make his peers, but especially Greg, it seems, laugh.
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4.8.3. Language education
Once a week, Greg and his class have got English, in which they are taught by Mr Twist, an American native speaker, who moved to Austria many years ago. Additionally, a second English teacher is present to monitor the students’ activity at all times, and offer further explanations if needed. Mr Twist tells me that Greg is very gifted in English and always given top grades.
The whole class is very lively, but the teacher manages to get them to calm down rather quickly. As the last students run to their seats, Greg limps behind on his crutches, with Anna holding him a little from behind. He plumps down on his seat and places his crutches beside his table, as Anna walks to the back of the class. Greg is sat at the very front of the classroom, as he too has got a seeing impairment, and would not be able to see what is written on the board from the back of the room. Also, it would take him considerably longer to get to his seat, and he would have to meander through the rows with his crutches. Anna tells me that it has never been an issue for Greg’s peers to leave one front seat to him, although they do like to fight over the others when the seating arrangements change, which are, however, never serious disputes, but simply young children enjoying a little competition.
Mr Twist speaks almost exclusively in very slow and clear English, and only translates new words into German. The lesson starts with the teacher asking the class how they are, which results in absolutely everyone raising their hands and waiting to tell Mr Twist how they are, by using previously learnt phrases and words, such as “I am a bit tired, but happy.”. When it is Greg’s turn, he does take a little more time to get his phrase out, but no one in class seems bothered by it, and they wait patiently until it is their turn to speak. After everyone has had their turn, the class learn a new way of telling someone how they are, and repeat it multiple times; first, student by student, and then in chorus.
Now, Mr Twist gets out his guitar and sings a song the class has already sung with him a few times. Yet, most students still need their lyric sheets, in order to be able to follow Mr Twist, while Greg seems to be the only one who knows the entire song by heart, and has not got any sheet on his desk. He is turned slightly to the side in his seat, in order to have a direct view of Mr Twist, and enthusiastically sings along to the song, while watching his teacher play. He does, however, leave out the first parts of some lines, as he struggles with the song’s pace. This does not seem to diminish his joy in singing along, though. Mr Twist does not sing any
~ 120 ~ song in its entirety, and tells me that he often changes the songs to prevent his students from becoming bored and inattentive.
The teacher then proceeds to hand out a short story, which each student has to read individually first, before two volunteers play it out in front of the class. While the students are reading, Mr Twist, the second English teacher, and Anna walk around the classroom, monitoring their students’ activity, and helping them if they do not understand a certain word. Greg is the only one of his class to not only read his text, but also highlight some words with coloured pens, which is a learning technique Anna has given him. She explains:
Er merkt sich zwar schon generell gut die Sachen, aber er verliert halt gerne einmal ein bisschen den Überblick, und da hilft es ihm schon, wenn ich ihm so gewisse Tipps gebe, damit er besser lernen kann.
He does remember stuff well, but he likes to lose the overview a little at times, and then it does help him, if I give him certain tips, so that he can study better.
During the reading task, Greg is not given any more one-on-one time with his teachers than the other students, as he does not need it and seems to work well on his own. When he does need a teacher’s help, but none of them are near him, his seating partner gets up quickly to run over to a teacher and ask them for help, as Greg tells me that shouting is not allowed during reading time
Anna tells me that Greg probably does need the lesson breaks more so than most of his peers, but manages to read and write about as quickly as they do, because he is always very focussed and willing to work. She explains that his attention span and concentration can fade as the day progresses, but he usually manages just fine with the general schedule and workload. Another detail that must be mentioned is that, similar to Dan, Greg has recently also had a myotenofasciotomy, which has already had an impact on his resilience in class, and his ability to sit for long periods of time without complaining about hip pain. Although his operation is mere weeks ago when I visit him, Anna tells me that it has already made a difference, and the entire school day has become easier for Greg.
Mr Twist now revises seasonal vocabulary with his class, which they have already learnt in combination with certain gestures and grimaces. Greg again proves his great memory, and can quickly shout out most of the terms and do the respective gestures. After the terms have been revised, Mr Twist turns to his guitar again and sings You’ve Got a Friend with his class, which they already know by heart, and which features the four seasons as well. Whenever
~ 121 ~ previously revised terms come up during the song, the students also do the respective gestures along with the words, such as holding their upper arms while singing “winter”. After they have sung most of the song, the students are given a worksheet, where they have to write the respective seasons under pictures that show people in different attire. The three teachers again walk around the class monitoring. Greg is the second one to finish this task, and happily raises his hand to signal it to his teachers.
To finish the lesson off, Mr Twist tells his students to draw something seasonal, which Greg again seems very passionate about. After he has finished his drawing, all three teachers gather around him to praise what a nice job he has done.
4.9. Conclusion
This chapter has shown that there were some significant differences between my participants, and their academic and social experiences with being integrated among non-disabled students. However, numerous important similarities have become apparent as well. Both of them will be discussed in the following chapter.
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5. CHAPTER 5: DISCUSSION OF FINDINGS
5.1. Introduction
In this chapter, I will discuss the findings of my research. I will reflect on the differences and the similarities between my cases, and discuss what theories or assumptions might be drawn from them. A goal of this study is also to consider what we could learn from them in order to better understand cerebral palsied children’s academic and social needs and abilities, and possibly improve and optimise their successful integration in mainstream education and prevent them from being discriminated, pigeonholed, and underestimated.
5.2. My participants’ standpoints towards their own disabilities
Being disabled can be psychologically challenging to come to terms with, especially if one has not been disabled for their entire life, as was touched on in section 2.2.1. Every affected person deals differently with being disabled, though, and it would be unfair to assume that every one of them is struggling with their situation. (“Coping With Disabilities,” n.d.) I have interviewed, observed, and studied a total of 7 main participants for this study. Yet, only one of them told me that he did in fact have to come to terms with his disability, and went through a phase of struggling with his differences. Chris questioned why he, out of all people, had to be disabled when he went into puberty, and he just wanted to be like everyone else; a dilemma similar to the one Francesca Martinez went through in her younger years. (2014) While Fiona also told me that her problems with fine motor movements sometimes bother her, she does not seem to actually struggle with the fact that she is disabled, and neither do my other participants. When it comes to how they view themselves, it seems that they are happy in their own skin. Even the now 20-year-old Chris has learnt to live with his disability, and appreciate the good things in his life; just like Miss Martinez has.
While seemingly none of my participants struggle with their situations (anymore), the general consensus seems to be that society is the real issue. None of my participants seem to mind being disabled or being called disabled. What they are still struggling with, however, are the obstacles set by the society they are living in, and its apparent underestimation of their values and abilities, which, despite the progress that has already been made in terms of integrating disabled people, still often holds them back from fulfilling their maximum potential. Teacher Johanne Hanko, who looks back on over 20 years of experience in working with children with special needs, and has recently published 100 Learning Games for Special Needs with Music, ~ 123 ~
Movement, Sounds and...Silence (2012), has come to realise over the course of her career that “[o]ne should never underestimate the capabilities of children with special needs”, as she witnessed her students succeed in tasks others advised her to avoid. (Kingsley, 2011)
Throughout our interview, Aaron was filled with anger over the underestimation he has experienced in his life. While he told me that he does not have issues with being disabled, the label itself often annoys him, as some people believe him to be completely incapable and dependent in every way. Although Aaron is in fact 100% physically dependent on his parents, assistants, and technical aids, he does have a lot to offer intellectually. He is fluent in two languages and, as he has proven in our interview, possesses strong, substantial political opinions. However, throughout his entire school career, he feels that he was not given the chance to show his intellect and his competences to his teachers and peers, as they did not take the time and effort to listen to him and let him be an integral part of their lessons. Mr Friend explained that in order to see a person’s potential, which he said was fairly easy to do for a teacher, there must be a certain willingness to see, which some people seem to lack.
Aaron told me that his teachers were always politically correct and careful in handling him. Yet, they put him in the back of the classroom, and did not include him in the general lessons at all. Aaron felt that he was never treated as an equal member of the class, and despite, or maybe all the more because of his teachers’ year-long experience with disabled students, they hardly trusted him to achieve anything. Aaron did not feel recognised as an individual with individual strengths and weaknesses, but as a disabled student, like the ones his teachers had had many times before. Mr Friend, on the other hand, openly discussed and tried to help Evan as much as he could with all of the issues that come along with his cerebral palsy. When I talked to the teacher, he openly addressed issues, such as the fact that Evan cannot control his salivation and pulls weird grimaces at times, due to his spasticity. Yet, he was the first one to fully accept Evan the way he is, treat him fairly, dare to see his potential, and fight for it to be implemented.
It would seem fair to conclude that actions speak louder than words. None of my participants cared about political correctness, and they did not shirk when I used terms such as disabled and spastic, because they do not regard them as inherently negative terms. Such terms become negative when other people attach negative connotations to them, and view disability or spasticity as something one should be ashamed of, and which should, therefore, not be mentioned. Academic and broadcaster Tom Shakespeare told campaigner and blogger
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Rebecca Atkinson that “’[n]egative association will pin itself to any word. Changing parlance will do nothing if there is not a shift in attitudes towards disability’”. (Atkinson, 2015) The writer herself has come to realise that, although she was uncertain about whether the term disabled was still appropriate, exchanging it with a new one again, which has repeatedly been done over the last decades, will not solve the real issue of discrimination against disabled people, which is still present today. (2015) When I asked Ben, Chris, Dan, Fiona, and Greg, whether they mind the use of certain terms referring to their condition, they did not even understand what I meant, and I had to explain to them that, due to political correctness, certain terms are not deemed appropriate anymore, which they responded to with astonishment and even laughter. Some of them, as well as their parents and teachers, even use terms I myself would not have dared to use in this thesis, referring to non-disabled people as “normal” ones.
After talking to my study’s main participants, their significant others, and further disabled people my view on political correctness is that it is a good thing to a certain extent. Disabled people should be treated with kindness and respect, and terms such as disabled should not be used as swearwords; this much is self-evident today. (Barnes, 2016) However, when we start to avoid using these terms in order not to offend people affected by disabilities, what we are actually implying is that disabilities are bad things, and people affected by them should be treated with extra care, as simply stating what they are might hurt them. Treating people with respect and care is always a good, welcomed thing. However, too much political correctness can hinder social relationships. Constant fear of doing or saying something wrong in the presence of another person will likely trigger feelings of unease, and prompt one to look for friends they can talk to more openly and freely. (Gallagher, 2013)
The people I have interviewed and talked to were all very open about their disabilities, and did not mind me being open about them as well, as they knew that I was not coming from a place of judgement, but simply wanted to get to know them better. It is not about the disability, it is about the person, yes, but, the disability is a part of that person, and there can be a certain pride in one’s disability as well, as it is part of what makes whoever is affected by it who they are. Dan believes that without his disability he would not have the deep connections with people that he does, because it allows him to look into people’s souls, and recognise who is a true friend and who is not. My brother himself has got a deep feeling of everything happening for a reason and him being the way he is, because that is the way he was supposed to be. Having been disabled from birth, he has never known life any differently,
~ 125 ~ and his disability is part of everything that makes him the person he is, and he would not wish to be any different.
Martinez writes in her book that for most of her childhood she could not accept the fact that she was disabled and somewhat different than her peers. She tried to hide her disability as much as possible and appear normal, which she later had to learn was a huge mistake, and kept her from feeling truly comfortable in her skin and being true to herself. (2014) Chris told me that wanting to hide one’s disability is a desire he can understand. He now recognises, though, that trying to be like everyone else and hide one’s apparent differences is not only impossible with a certain degree of disability, but more importantly a detraction of the very special and individual person one is. True freedom and equality lies in accepting yourself and other people for who they are, no matter how different they may be from you. American writer and activist Audre Lorde said: “’It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.’” (“Audre Lorde – The Berlin Years 1984 to 1992,” 2012)
5.3. Integrating cerebral palsied people in mainstream education
Due to their age gaps, my participants have had some fundamental differences in their experiences with getting into mainstream education. While Aaron did not actually attend a regular secondary school for his English lessons, but was sent back to elementary school, Ben’s, Chris’, and Evan’s parents had to fight hard for their sons to be given the chance to attend regular schools. Dan, Fiona, and Greg, however, already profited from the shift in Austria’s school system that led authorities to be more open-minded about disabled people attending regular schools with extra assistance. In 2014, a report from the University of Innsbruck claimed that the Austrian special school model was violating the UN Convention on the Rights of Persons with Disabilities. (Mittelstaedt, 2014) Article 26 of the Charter of Fundamental Rights of the European Union, established in 2000, stated that every disabled person has the right to be provided with the necessary tools that allow them maximum independence. Furthermore, they have the right to be included socially and professionally in general society, and take part in its existence. (Imprimerie Nationale, 2005)
I have personally experienced the shift in the integration of disabled people in Austrian regular schools, and can still remember how much easier it was to get my brother into a regular secondary school, after the long struggle it took from my father to have him attend a mainstream primary school. It is fair to say that a lot of progress has already been made at ~ 126 ~ least on the theoretical and legislative levels of integrating disabled people over the last decade. As was mentioned in section 2.2.4.2., by 2020, special education schools are to be the exception in Austria, and children with all kinds of disabilities will be accepted in the same schools as their non-disabled peers. (Mittelstaedt, 2014) Furthermore, teachers will no longer be trained purely in special education, as regular primary and secondary school teachers will receive adequate training, if they want to teach integration classes. (Schorn, 2014)
I do not wish to claim that integrating children with all kinds of disabilities is in fact the right thing to do, as I am not informed well enough about every kind of disability there is and what issues they might entail; especially with regard to mental disabilities, which pose a whole range of different obstacles in social matters. However, in regard to cerebral palsy, as this thesis has hopefully made clear, this particular disability can but does not necessarily affect a person’s intelligence. (see section 2.3.3. and Rogers, 2011) McKeown even advises language teachers of cerebral palsied students to have high academic expectations. (2004) None of the participants I have been lucky enough to talk to and watch during their language lessons seemed to be unsuited for the schools they had been or are attending, in which they always received top grades in English and did well in other subjects too.
However, integration does not stop with putting a disabled child in a class full of non-disabled students. Further steps must be taken, in order for the student with special needs to be able to live up to their potential. They will present themselves in section 5.6. Unfortunately, not all of my participants felt like they had been taught by teachers who took the time to get to know them sufficiently, in order to be able to support them optimally. The schools themselves seemed to not always have been very helpful too. I believe it is fair to say that out of all my participants Aaron had the worst school experiences. During his secondary education, he most certainly had the highest level of English in his entire class, as he was raised bilingually. Yet, Mrs Miller and the entire school failed to utilise his competences, and further his potential. After he had been given an old typewriter that he could not work with, as he was unable to hit the keys individually, let alone hard enough, the chances of him learning how to write were immediately given up. In contrast to Chris and Dan, who had to train their writing for hours at school, in order to get to the level they are at today, Mrs Miller openly told me that there was simply no time for such things. He could have easily been sat to the front of the classroom, though, where, due to his shortsightedness, he could have gotten a better look at the teacher and board. This was not deemed necessary, as Aaron cannot read, and thus could not have had any interest in getting a good look at the front of the classroom, Mrs Miller insinuated. ~ 127 ~
Aaron himself, on the other hand, recalled that he had always felt like a visitor in his English lessons, who was merely present to observe them, but not actively participate. It seems almost tragic to me that a native speaker of English was deemed incapable of contributing to the language lessons of a 4th grade elementary class. It is hard to understand Aaron, in fact very hard at first, but it is something one can get used to once they get to know him, which should automatically happen when they are attending the same class as him, or have been teaching him for many years. Aaron is a smart young man, and it is devastating to hear how disappointing his school career was, and how angry this fact still makes him. When I started my series of interviews with him as my first participant, I must admit that I was worried about where my study would lead me, as I had previously thought him to have had a good school experience, and had hoped to be given some useful advice on how to best integrate cerebral palsied students into mainstream language education. However, while not everything was perfect for my other participants as well, Aaron luckily remained the only example of integration that failed on all levels, enriching my study with examples of what should be avoided when integrating a cerebral palsied student. In combination with the useful insights into how integration can work I gathered from my other participants, I am hoping that this thesis provides its readers with a comprehensive picture. Although most of my participants’ parents had to fight for their children to be integrated, and even then, Evan was not immediately accepted by all of his school’s teachers, and all of my participants had to procure their own assistants and even technical aids, such as computers and special keyboards, they were eventually taught, motivated, and furthered as equal students in their respective schools.
What the decisive difference between Aaron’s and my other participants’ schools was, I dare not surmise, as Aaron’s school too looked backed on decades of integrative teaching, and a lot of experience. A study on integrating disabled children in mainstream primary schools in Lesotho suggests that teachers can do a better job at encouraging and furthering integration if given appropriate training. (Mariga & Phachaka, 1993) Save the Children, on the other hand, suggests experience to have shown that no “’special skills’” are required apart from clear, accessible teaching, and possibly technical aids. (2002, p. 19) My own insights into my participants’ school careers have shown me the importance of a skilled, yet open-minded, fearless, and flexible approach towards one’s students. Mr Friend explained that preset rules must not be valued over individuals: “We do everything we can for that [individual].” Whether that person is disabled or not, it is a teacher’s job to get to know their student, and find out where their strengths and weaknesses lie, in order to be able to best support their
~ 128 ~ education. (Neuhauser & Ettinger, 2013) As Dan’s mother told me, he often came home exhausted from his school day, but his teachers knew what they were doing, and how much he could take, and he always was and still is grateful to them not only for the hard work they took upon themselves in taking care of his education, but also for the hard work they made him do, as it led to him being able to work not simply in a workshop for disabled people but an actual post office, where he feels a great satisfaction with and pride in the job he is doing.
Educationalist John Hattie conducted the biggest educational study to date, which included 250 million students, and came to a simple conclusion: „Im Zentrum steht der Lehrer. Mit ihm und seiner Arbeit kommt und geht der Lernerfolg der Schüler. [At the centre is the teacher. With him and his work the students’ learning success comes and goes.]” This somewhat closes the long debate on how important teacher training and good teaching actually is, and how much of the students’ success depends on it. (Neuhauser & Ettinger, 2013) Dan’s former English teacher Mrs Smith explained that the situation can, of course, be harder for a teacher, when having to include a disabled person in their lesson, as getting to know their special needs takes time and empathy, and further providing them with what they need can be more time-consuming and generally demanding than teaching only non-disabled children. However, a certain amount of empathy and intuition is required by every person working with children and young adults. (Neuhauser & Ettinger, 2013) Mr Friend recalled how it was all the more rewarding to see the outcome of Evan’s education, and how far he was able to come, despite what some people had predicted at first.
Ultimately, education simply is a basic human right in our society, and denying disabled people from attaining the best possible kind of education they can means excluding them from these rights that every other person is enjoying. Article 26 of the Universal Declaration of Human Rights from 1948 states that higher education must be available to everyone according to their abilities. (“Allgemeine Erklärung der Menschenrechte,” 1948) This means that, strictly speaking, denying Evan the right to graduate high school and attend university would have been denying him of his human rights, as he clearly possesses the mental capacity to follow tertiary education. Integrating disabled people in mainstream education is not about forcing them to do something they cannot do properly or at all, but simply about not getting in the way, and letting them fulfil their potential like any other person.
Ben and Chris attended a Hauptschule with different competence streams and, in the main subjects, fared well in the latter one of three, while Dan and Fiona attended and attend an
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NMS, being taught in separate groups of academically weaker students in the main subjects too. Chris’ two disabled classmates also had a second teacher, who provided them with adjusted material. This proves that, although the idea of including students of all competence levels in one class might have been a nice one and meant well, a certain distinction must be made in order for all parties to get the most out of their time at school, and be able to be productive at their own paces. While heterogeneous groups can work well every now and again, and encourage strong students to help weak ones and in doing so strengthen their own knowledge as well, it is not advisable to have young learners work exclusively in heterogeneous groups, as weak students are likely to become stressed and consequently passive, while strong ones will lose patience with having to take the lead every time. As Mrs Kind already explained, homogenous groups also allow for weak students to have their own moments of success, which are less likely to happen when they are constantly teamed with much stronger students. Therefore, it is important to find the right balance between integration and differentiation, which, according to my findings, both school systems seem to have succeeded in, as they both separated classes in the main subjects, and taught them together in all the other ones, which my participants reported to have worked well. (B. Johnson, 2014)
The decisive difference between the old Hauptschule and the new NMS is merely that it can now decide for itself how it chooses to differentiate between heterogeneous groups of students and the varying modes of instruction they require in each subject. (Dragendorf/Necker-Zeiher, 2009) This means that separate groups are not imperative anymore, but can be decided on if the respective school deems them beneficial. What this system proves, however, is that a certain distinction between competence levels does not have to mean that children with physical or mental disabilities must be put into entirely different schools, and thus denied all contact with non-disabled children. As my empirical research has shown, the successful inclusion of disabled students among their non-disabled peers does not depend on whether they are taught in the same classroom in absolutely all subjects, and great friendships can form between them even if they are occasionally separated and only see each other during lesson breaks.
5.4. Integrating cerebral palsied people among their non-disabled peers
As Article 26 of the Universal Declaration of Human Rights further states, education must promote understanding, tolerance, and friendship. (“Allgemeine Erklärung der Menschenrechte,” 1948) This counts for both non-disabled and disabled children, of course.
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During my interview with Aaron, I have witnessed a certain stubbornness and refusal from his side to understand other people’s standpoints. He did not accept that there might be people who struggle to understand him, and persisted that such a thing must not be the case anymore nowadays. Evan, Dan, and Fiona, on the other hand, struck me with their empathy for other people. The boys try their best to speak clearly, in order to make it easier for others, and also admitted that it must be difficult and tiring to listen to them at times. Evan further understood that his peers could not have known that he struggles to control his emotions at times, and believed that they had every right to get mad at him for laughing during a presentation on something tragic. Fiona understood why some people might not want to include her in a dance.
However, these instances prove how important it is to be informed and give people the chance of getting to know disabled people, and understanding who exactly they are and why they might do certain things at all or in a different way. Kindergarten and school are the first social environments a child is put in, and it is their job to not only provide their pupils with inert knowledge, but furthermore also educate them on moral values, neighbourly love, and mutual understanding and acceptance. A child’s education starts when they are still very young and influenceable. They learn to see the world the way it is presented to them when they are only a few years old, and it can be very hard to change the mindset one has acquired at a very young age. It is by definition every primary school’s job to encourage things such as humanity, solidarity, tolerance, and social understanding among its students. Moreover, the Austrian curriculum for primary schools explicitly states that disabled children are to be included and their social integration among their peers is to be encouraged by their educators. (Bundesministerium für Bildung und Frauen, 2012a) „Die Schule wird somit zum Begegnungsort behinderter und nicht behinderter Kinder. [Thus, school becomes the meeting place for disabled and non-disabled children.]“ (Bundesministerium für Bildung und Frauen, 2012a, p. 17)
I believe it is fair to conclude that integrating disabled children among non-disabled ones is not only beneficial to the disabled child, but there can be advantages for the non-disabled child too, as they learn early on how to treat a different person with respect, and be there as a friend. As Sue Stubbs, Save the Children UK’s former Disability Adviser, explained: “Inclusive education is a strategy contributing towards the ultimate goal of promoting an inclusive society.” (Save the Children, 2002, p. 21) Chris’ and Dan’s friends appear to have grown up to be tolerant and respectful human beings, who were not only sweet to their ~ 131 ~ disabled friends, but, as Chris’ and Dan’s parents’ and former teachers’ reports suggest, always well-behaved and obedient towards authorities. While Evan reported that he was not able to really bond with any of his peers from secondary school, and I have personally seen Fiona get teased by children who have only known her since secondary school, and have never given her a chance to show them how much fun she can be, I can still remember the heartwarming interaction between my brother and his early childhood friends, and have also witnessed Fiona’s and Greg’s apparent closeness to the children they have known since kindergarten. There was not only an obvious ease in their interactions, but they seemed to be well-coordinated teams. The bond between my main participants and their non-disabled friends generally seemed to be closer than between the non-disabled children, and a lot of physical contact was involved, from stroking their friend’s hair to even cuddling with them on occasion. Dan’s parents told me that it took their son a long time to control his salivation. Yet, he is closely surrounded by his friends in most of the old pictures they showed me, and not one of the children hugging him in them seems to have an issue with Dan’s dribbling and his slightly wet shirt.
This underlines what Quartano has said about the early integration of physically disabled children. (see section 2.3.1.) Integrating them among non-disabled peers at an age where children already notice difference, but are not fazed by it yet, and their perception of people is not yet shaped by prejudices and assumptions is setting optimal conditions for full integration and equality. (Quartano, 2011) Non-disabled children will most likely accept physical difference, at least the particular kind they have grown up with and thus grown accustomed to, as a natural and normal part of life, as they have known it for as long as they can remember. I very much hope that Chris’ mission to sensitise people is something that will not be necessary anymore in the future, because I do not wish for disabled people to be a subject others inform themselves about, so that they know how to handle it, as this always implies a degradation of disabled people, and makes social interaction inauthentic and uncomfortable. I have introduced my brother to many people before and can see the discomfort in some of them, as they are uncertain of how to great him, whether they are even allowed to touch him, what they are allowed to laugh about, and what not. There can be a certain social awkwardness around people who have never been in contact with disabled people before. My boyfriend’s 8-year- old niece even admitted to me that she was scared of my brother when first meeting him, as she had never seen a severely disabled person before. This simply must not be the case in the
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21st century anymore. As long as there are still people who are afraid of disabled people, or scared of interacting with them, integration and social equality cannot be entirely successful.
Discriminatory attitudes towards disabled people persist in society because of lack of awareness and information and little, or no, experience of living closely with disabled people. It is difficult to break down these attitudinal barriers, but experience has shown that, within the right context, children can be more accepting of difference than adults. [...] If they go to school with disabled children they will learn not to discriminate – this is a lesson for life. (Save the Children, 2002, p. 20)
This further emphasises how early integration can help us get out of the above described impasse, and learn to be comfortable in the presence of disability, as it allows everyone to learn and understand in their most formative years that disabled people are perfectly normal, not to be pitied, and can make for excellent friends too. While I am aware of the fact that even early integration does not always result in positive relationships between disabled and non- disabled people (which Aaron’s example showed, as he spent many years among primary school children, who did not accept him as an equal), many experts, such as Save the Children in the above cited quote or also Christine Salisbury, professor of special education, suggest that it can be a remedy for much social intolerance. (Salisbury, 1991) Integrating children among their most diverse peers, and fostering friendships between disabled and non-disabled, male and female, Caucasian and non-Caucasian, Austrian and foreign children can enable them to experience the world as a place that is full of diversity, but where everyone is still equal as a human being. Thus, today’s children can grow into tolerant, undiscriminating adults, who do not categorise others by superficial characteristics that have no informative value on their inner qualities.
5.5. My participants’ standpoints towards education
The previous sections have already elaborated on disabled people’s right to attain an education that stands in accordance with their intelligence level. Aaron stressed that education in general is all the more important for disabled people. In order to understand why this could be, a look at Evan’s example might be enlightening. Evan is a grown man, who does not have any friends or love interests. He can hardly move his body purposefully, and will forever need his parents’ or an assistant’s help for almost anything. The one thing he does not need help with per se is studying. He was always remarkably good at remembering words, facts, and figures. As Mr Friend told me, Evan’s academic life was and probably still is a substitution for his non-existing social and love life. One should, however, refrain from feeling sorry for Evan, as he has in fact managed to find his self-worth, as well as his purpose and joy for ~ 133 ~ living, in the acquisition and transfer of knowledge. Evan may not always be grammatically stable, but he speaks fluent English and can help my history fanatic mother out on historical facts. Of course, not every cerebral palsied student will be as academically gifted or ambitious as Evan, but what this section will try to clarify is the importance of responding to the individual child’s academic aspirations, and furthering their potential accordingly, without asking too little or too much of them.
Chris’ mother admitted that, due to her son’s physical disability, she and her husband had long hoped for him to thrive academically and emerge as somewhat of a computer expert, attain a high school degree, and subsequent well paid office job. These aspirations were, however, never those of Chris, who had to realise, especially after ending his school career, that his physical impairment was simply too restricting, and he could not keep up with the demands of most regular day jobs. As was mentioned in section 2.2.4.2., it can be a devastating epiphany for the disabled child to fully recognise their limitations for the first time. However, although Chris tried to keep up with the modern performance pressure for a while, he is not depressed in having had to set his goals lower, as he is now working in a job that leaves him fulfilled and happy. My other participants have also told me that they do not mind their limitations, and have learnt to appreciate the things they can do and the situations they are in, whether it be in school, university, or a job. As explained in section 2.2.4.2., Maestro calls attention on the influence their educators can have on a child’s self-image and satisfaction with their personal situation. (1998) My own research somewhat verifies this, as my participants with successful school careers and supportive teachers now seem to be a lot more self-assured and at peace with themselves.
Having known Chris for a long time, I was personally able to witness a great shift in his personality and self-awareness after his parents realised that they had been expecting too much from their son, and had to be more realistic and focus not mainly on getting him as far as possible academically, but on allowing for him to become as content with his life as possible and find fulfilment in what he does. Aristotle said that “[k]nowing yourself is the beginning of all wisdom.” (Biography.com Editors, n.d.) While the importance of goals in education, and their encouragement of motivation and future achievement have long been established, setting unrealistic goals can be detrimental to a learner, as they are more likely to function as a barrier in their learning process, and lead to disappointment and giving up, rather than working harder. (McColl, 2002; Pinilis, n.d.) Chris, Dan, and Evan have learnt to take many things, such as language courses, trips, and jobs, into their own hands, despite ~ 134 ~ recognising their limitations. They are grateful to their schools for not leading them to believe that they might achieve more than they ever could, but making them believe in themselves, and their academic abilities and linguistic competences to a realistic extent, as they realise the importance of self-confidence for learner motivation (discussed in section 5.6.2.), and the possession of a certain level of education. Not one of my participants wished to have been put into a special school. Everyone, aside from Aaron, was very glad to have been given the chance to receive the education they have received, and believe they still profit from it, even if they are employed in a workshop for disabled people only.
Aaron, on the other hand, is still very bitter about not having been given the chance to live up to his potential and improve through school. Most of what he knows now he knows from watching the news and documentaries, and listening to audio books. He felt neglected in his school, and blames it for not teaching him how to handle certain technical aids, like Chris and Dan have learnt to do, in order to gain more independence. Although Ben did learn how to write on a computer, his school too claimed not to have had the time to practise his reading, meaning that his assistant mostly read things out to him in order to save time. When I asked him what he needed in order to feel comfortable in a lesson, he answered me with the wish for teachers to always be on time, which implies the time pressure he did not explicitly mention, but seems to have been under in his lessons at times. Kress stresses the importance of allowing each student the time they require to fulfil certain tasks. In Ben’s case, giving him a slightly reduced task might have made it possible for him to read things himself, without feeling stressed. (2014) When comparing Aaron and Ben to my other participants, who have acquired as high a level of independence as their bodies probably allow, and are eager to manage as many things as they can on their own, it becomes clear how important it is to further such a mindset in one’s students, and encourage them to do as much as possible on their own, and take their time, but use it effectively to work to the best of their own abilities. As was mentioned in section 2.2.4.2., Ferrari et al. mention the influence the cerebral palsied child’s environment can have on their physical and mental development. (1998) I believe Chris’ and Dan’s openness in approaching new situations and people to stem at least to some extent from their positive school experiences, and being supported and encouraged in their abilities to achieve certain things they aspired to.
Of course, schools will need to invest extra time and effort (but no money, as all additional expenses had to be covered by my participants’ parents) to best support their disabled student(s). However, seeing the outcome, and the difference between the still angry and ~ 135 ~ disappointed Aaron, and most of my other participants, who struck me with their maturity and fight for maximum independence, speaks for itself, and is surely well worth going the extra mile for a committed teacher, who wants the best for young learners. All of my main participants manifested themselves to me as smart young people, who have got a lot to say, but are not always given the chance to do so. In trying to make listening to their stories easier, even their parents often interrupted them to finish their sentences and speak for their children, while we were casually chatting before or after my interviews, which, some of them told me, disturbs them greatly, as it makes them appear younger and more immature than they are. While people often mean no harm in finishing somebody else’s sentence, and might also use it as a technique to show the other person that they are listening to them and understand them, interrupting someone in this way can be referred to as active non-listening, and can hinder effective communication and, as in the above described case, keep people from speaking their mind and asserting themselves. (Sharland, n.d.) All of my main participants proved their ability to speak for themselves and for a long period of time during our extensive interviews and further conversations. However, I was astounded by how little Chris got to say during our joint discussion with his mother, after he had been flooding me with opinions, stories, and jokes for almost two hours shortly before.
As was suggested in section 2.2.4.2., parents and teachers are facing a complex task in educating cerebral palsied children, and it is a fine line to tread between overexerting and underestimating the child. (Kunert, 1982; Maestro, 1998) However, as will be elaborated on in section 5.6.6.2., allowing for people with cerebral palsy to speak freely and finish their own sentences is of particular importance to them, as speaking often is their only way of expressing themselves, and repeatedly interrupting them, or not letting them speak at all, can hinder these children’s belief in their abilities to do things on their own, and stifle their independence. Websites about cerebral palsy even offer advice on how to successfully communicate with a cerebral palsied child. (“Listen and Be Heard,” n.d.) I believe it is fair to suggest that taking cerebral palsied people seriously must start at home, and be furthered in school. Educators must take these children seriously, in order for them and their peers to be able to do the same. Mr Friend told me that he believes it to be especially difficult for teenagers to accept and respect disabled people, as they are in a very insecure place in their lives themselves. Therefore, it is their educators’ job to show them that their cerebral palsied peer is just as valuable as they are, and has every right to speak up, take part in the regular school experience, and receive an extensive education that they do.
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5.6. My participants’ school experiences with language learning
Dan’s favourite subject at school was physical education, and most of my main participants tell me that they enjoy sports a lot, which proves that one should not judge a book by its cover, and assume that a person has no way of being active, due to their physical disability, or learn a second or, like Evan, even third, or fourth language, due to their speech impairment and inability to read and write. (McColl, 2002) All of my participants enjoy languages, and especially like English. Apart from Aaron, whose reason for his disappointment in his language education I believe to be clear by now, all of them were and are very happy with their language education at school. The following discussion will try to find a set of guidelines based on these participants’ experiences of how successful language learning could take place with cerebral palsied students.
5.6.1. Classroom atmosphere and personal relationships
A positive classroom atmosphere and good relationships between the students and their teachers are important to the class’ learning success. (McColl, 2002) They can be especially important for cerebral palsied students, as they already struggle with muscle tension, which a dismissive environment, and subsequent nervousness and discomfort can aggravate. (“Cerebral Palsy,” n.d.-b; Rogers, 2011) Many things play together in the creation of a classroom’s general atmosphere, and not all of them can be influenced by the teacher or the disabled child themselves. (A. Miller & Cunningham, 2011) However, my participants and some of their teachers have given me some advice on how to handle the situation of having or being a cerebral palsied child in the regular classroom.
Dan told me that he spoke to any new peers about his desire for them to be open with him, and not worry about making any mistakes. This made the general atmosphere in his classes very relaxed and understanding. Ben, Chris, Fiona, and Greg too seemed to have been and to still be among people who know, understand, and appreciate them enough for the class atmosphere to be relaxed and inclusive, which allowed and allows for them to show their full potential in school, without fearing their peers’ reactions. Mrs Kind even told me that Fiona is better concentrated and more attentive on days where all of her best friends are in school with her, because she feels safer with them around. As I was able to witness during breaks, Fiona’s speech becomes less clear and she begins to stutter when she gets teased. Although Mrs Kind told me that she does become nervous before presentations in front of her friends too, Fiona is not nervous when making a casual comment or giving an answer in class. I have heard the ~ 137 ~ same from Ben’s, Chris’, and Dan’s teachers, while Mr Friend told me that Evan always tried to speak as quickly as possible in front of his peers, so that they would not lose patience with him, which ultimately made his speech even less intelligible, and his peers even more bored and impatient with him.
While it is important to recognise the differences in each student, and treat them as an individual, teachers should also refrain from letting their actions be guided by false assumptions, and treating a disabled student completely differently to their peers, as this can not only influence their own teaching in a negative way, but further transfer the wrong attitudes towards the disabled child onto their students, and subsequently hinder their optimal inclusion among their peers. (Davis, 2009) Francesca Martinez’ teacher seemed to rather scare her class in preparing them for the new and very different disabled student. (see section 2.3.5. and Martinez, 2014) Mrs Smith explained that “doing the normal” is the best thing a teacher can do. Simply treating the situation, and the class in general, like any other is the most natural and unforced way of addressing the inclusion of a disabled student, as the non- disabled ones will immediately see their new peer as something very different, if the teacher previously introduced them as such, which will subsequently complicate their integration.
Mr Friend further told me that it is also important to show the non-disabled students that, despite their additional assistance and special arrangements, the disabled student is not privileged. Curwin explains how important fairness is to students, but further elaborates that treating them differently is the fairest thing to do, as every student exhibits different learner needs, and requires a more or less different instruction and general treatment. In order to further a peaceful class atmosphere, this should be made clear to one’s students right away. (2012) Although Mr Friend told his students that their spelling would not be weighed as heavily with Evan in their class, as his could not be graded at all, he also made sure to remind them of Evan’s disadvantages and consequent need to work harder in certain areas than them. Aaron and Evan could not read or write effectively enough to use it for school, and had to learn everything by hearing, which would be very difficult for many people. In elementary school, Dan was often taken out of his lessons for his speech therapy, which meant that he did not only miss parts of the general lessons, but also had more work to do than his peers who did not have to train their speech. It is this kind of mutual understanding, acceptance, and knowledge that everyone has to work equally as hard that is very important for a peaceful classroom atmosphere and productive learning environment.
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As was mentioned in section 2.3.5.1., by praising social behaviour among one’s students, a teacher can encourage them to treat each other better, and thus further a positive atmosphere in class. (Eichhorn, 2013) Although Mr Friend was not able to influence his students as much as to provoke close friendships between them and Evan, he did get them to behave well towards him at least in front of authorities. Mrs Miller seems to have never really acknowledged the fact that Aaron was part of her group, which meant that neither did her non-disabled students. On the other hand, while I was sitting in on one of Greg’s lessons, I noticed that his teachers praised only his drawing, but none of his peers’, which did not seem to bother anyone, could, however, become harmful to him in time, as children often recognise unfair praise, which can lead to envy and tension among the class. (Bear, 2010; Lundy, 2008) Fiona’s teacher Mrs Johnson emphasised the importance of genuine feedback that is not motivated by pity or purely an attempt to motivate a student. Feedback must always be honest for it to be fair, and for other students not to become envious of their peer, as they can detect favouritism, and will likely become dismissive of a peer who seems to be enjoying this phenomenon. Lundy highlights the benefits of collective feedback that is addressed to the entire class, which would have been perfectly suitable in the above mentioned example, where the entire class produced different drawings. (2008)
As section 2.3.4.2. explained, nervousness can greatly influence the performance level of a student with cerebral palsy, as it complicates the differentiation between the reaction of different nerve cells. (Doroftei, 2015) Not feeling comfortable in one’s working environment and not feeling like one belongs can lead to general nervousness and tension. Furthermore, a student’s willingness to actively participate in class, and therefore fulfil one of the main requirements of a school day, can decrease if they feel uneasy interacting and cooperating with their peers. (“Increasing Student Participation,” 2009) Aaron had to fight for his right to be able to speak in class, and forced it to listen to him by doing voluntary presentations. This did not help his standing in the class, though, as his peers got increasingly bored during his monologues. Evan encountered the same problem with his peers. His example shows a decisive difference, though, which made his school career the success it was, and made him look forward to most lessons, which was his relationship to some of his teachers. Evan was not treated as an equal among his peers, but found recognition in certain teachers, and managed to blend out the rest of the class, and focus on them. Mr Friend also knew that group work always represented a difficult and stressful situation for Evan and, after realising that it would not foster any friendships, but rather create anger in Evan over his peers’ failure to
~ 139 ~ recognise his potential to help them, tried to avoid it in his lessons, despite aiming to keep everything else as normal as possible, and make no changes to his general lessons for Evan.
One more wish Evan was granted by Mr Friend was to sit alone, as he preferred it that way, and was better able to focus on his teachers. This suggests that a generally positive and inclusive classroom atmosphere is not absolutely imperative for a cerebral palsied student to feel comfortable in their lessons and enjoy them. They do, however, need someone to hold onto and feel “at home” with, which is how Mr Friend described Evan’s emotions towards his supportive teachers. Evan managed to focus on the main purpose of his time at school, his education, and was grateful for his supportive teachers, which altogether made his school career a pleasant experience for him. (Naylor, 2010) While Ben, Chris, Dan, Fiona, and Greg felt and feel at home with their school friends around them, Evan felt comfortable with his teachers, and they allowed for him to relax the way my other participants’ friends did and do for them, and be able to concentrate on the lessons’ contents, rather than be nervous in the presence of his dismissive peers.
5.6.2. Learner motivation and confidence
Motivation and confidence are generally important characteristics for any learner to be willing to study, and believe in their ability to achieve something, and thus recognise a purpose and attainable goal in their academic aspirations. Self-belief is crucial for a student to be motivated and continue to follow their goals, as it helps them to trust in the future outcome of their studies and commitment to their academic work. (Dörnyei, 2009) Although an exaggerated confidence and wrong assessment of one’s abilities is not preferable and can lead to future disappointment (as discussed in section 5.5.), I do not believe it to be detrimental to Ben’s language learning. He does view his English to be better than it actually is, having told me that it is like a mother tongue to him, which, however, makes him fearless about using it and talking to anyone in English, as opposed to Aaron, whose mother tongue actually is English, but who, for some reason, shied away from using it for our interview. I believe a decisive difference in this situation to be the two men’s different experiences at school. While they both seemed not to have been furthered as much as my other participants, Ben’s advantage is that he was taken seriously at school, and allowed to show off his full potential with Mrs Burns, who only spoke to him in English, even during breaks, which gave him a great confidence boost, and motivated him to continue learning and improving his English, as he was able to recognise a purpose in his endeavour. (Dörnyei, 2009) Aaron was never given
~ 140 ~ the chance to show off his potential, and, according to his own reports, his teachers did not seem dedicated to motivating him, and furthering his commitment and cooperation.
Dörnyei discusses the teacher’s impact on student motivation. Evan’s example best shows the effects a supportive teacher can have on a student’s linguistic self-confidence, and moreover the effects this confidence can have on their motivation. (2009) He would never have attempted to graduate school, let alone specialise in languages, had his teacher not made him believe in himself, and continuously pushed him, until even his doubters became a motivation for Evan, and he wanted to prove them wrong and make them see what Mr Friend saw in him right away. There is no doubt about the fact that Evan’s English would be nowhere near as good as it is today, had he not received such an immense confidence boost from his English teacher, who was after all a person of respect and authority for Evan, and whose professional opinion he trusted. Mr Friend helped Evan create an Ideal L2 Self of himself, which he eventually trusted he would be able to reach, and thus worked towards. (Dörnyei, 2009) After not enjoying having to translate song lyrics in elementary school, because he was uncertain of his ability to do so, Evan told me that his newfound confidence in the second part of secondary school made him more competent, as he dared to participate more actively in his language classes, and was not as afraid to make mistakes as he used to be anymore.
Mr Friend explained the importance of a certain willingness to see potential in students, which he believes some teachers to lack, if they realise that it would be accompanied by additional work for them. Chris’ second English teacher, as well as Dan’s and Fiona’s teachers, did have to make an extra effort to provide her disabled students with the materials they needed to fulfil their potential and make the most of their time at school. The students told me that their school days were and are exhausting at times, but that they are nonetheless grateful to have been and be given the chance to study and improve, and have never felt overexerted. As was mentioned in section 2.3.5.2., “cerebral palsied children can make great gains in function if they work to their maximum potential”. (Brown, 1967, p. 385) A teacher’s job is simply to recognise that potential’s limitations, and work towards them without overstepping them, while showing their student how much they are capable of, and making them believe in themselves, so that they may have the confidence to make a conscious effort. It certainly is not the easiest job, but it is by definition a teacher’s job to build confidence in each of their students, and motivate them to fulfil their potential. (Bundesministerium für Bildung und Frauen, 2012b)
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5.6.3. Concentration
Despite furthering the cerebral palsied student to one’s best abilities being a desirable thing, as was just mentioned, it is also important to know the boundaries set by their disability. One of them can be a limited concentration span and resilience. As was discussed in section 2.3.5.3., more breaks might be necessary, and giving the cerebral palsied student more than one task at a time is not advisable. (Brown, 1967; Kien, 2004) However, not one of my participants complained about their teachers ever having asked too much of them, and none of them ever needed any additional breaks, although Greg’s assistant Anna did tell me that he probably needs the regular lesson breaks more so than his peers, and Ben’s former English teacher Mrs Bricks and Chris’ former assistant told me that they found it harder to concentrate, and tended to make more mistakes as the school day progressed.
Although physiotherapy can help in this regard by loosening tight muscles and relaxing the stressed student, none of my participants’ therapy made enough of an impact for them to explicitly feel relief in their lessons, and be able to work harder. (Kien, 2004) Dan was the only one to be able to register a decisive difference in his resilience and ability to concentrate for an extended amount of time after his myotenofasciotomy, as his general muscle tone was reduced, and he was more relaxed all over throughout the entire school day, and no longer needed breaks while doing his homework in the afternoon. (Nazarov, 2013) This shows that integration and educational techniques are not always the only solution, and sometimes the right therapy or operation can have a hugely beneficial effect on the cerebral palsied student’s academic success, wherefore this option should not be disregarded and shied away from.
When looking at Fiona’s example, a limited concentration span is not merely due to her spasticity, but also triggered by the fact that she has got a learning disability. (“How does cerebral palsy affect people?,” n.d.) However, Mrs Johnson skilfully handles her group’s short attention span by frequently shifting between different kinds of short exercises. This means that the group is continually aroused and prompted to discover new tasks, which keeps them focussed and attentive. (C. Miller, 2013) As was mentioned before, Fiona’s concentration and performance also benefit from her friends being present. This becomes understandable, if we consider the fact that nervousness can influence any person’s, but especially a cerebral palsied one’s, concentration level, and being among people one feels comfortable with can help relax them and calm their nerves. (see section 2.3.5.3.) (Segal, Smith, Segal, & Robinson, 2016) Evan too told me that he found it harder to concentrate when feeling nervous, be it because of
~ 142 ~ a presentation in front of his class, or an examination, which occasionally also made him forget words, despite remembering terms and facts being his big forte. This further proves the importance of a relaxed and positive classroom atmosphere, in which the cerebral palsied student feels comfortable and free enough to participate, without fear of making mistakes. Evan told me that he learnt to overcome his nervousness when talking in front of his peers, by concentrating on the subject matter itself, which he was always very familiar with, and the teacher as his only recipient, whom he trusted.
5.6.4. Music
The positive effects of music on cerebral palsied people have already been elaborated on in section 2.3.5.4. While it can be used to promote learner motivation and aid language learning in general among all kinds of students, disabled or not, it has proven to get an especially positive response with and have significant benefits for speech impaired children. (Bläsig, 1982; Dörnyei, 2009; Milani-Comparetti, 1974) Chris told me that he finds music to lighten the mood of any lesson, and bring more energy to it and its participants, as it is a topic most children and young adults have an interest in, and are enthusiastic about. I was able to witness Greg’s enthusiasm when his class sang a song and he even shifted in his seat, in order to be able to get a direct view on his guitar-playing and singing teacher. All of my participants seem to have a passion for music, and have had and still have many musical elements in their English lessons, which they enjoy greatly.
Another advantage music has got, which is of particular relevance to students with cerebral palsy, is that, if perceived as pleasant and soothing by the listener, it relaxes their muscles, relieving stress, and making them calmer, which can eventually help them persevere throughout a long school day, and further their concentration and resilience. (“Releasing stress through the power of music,” n.d.) Consistent with Bläsig’s explanation that music calms athetoid people and reduces spasticity, Aaron, who is athetoid, told me that whenever he feels nervous before an interview, he simply listens to music, as it helps him relax and be able to do a better job later on, while Dan, who is spastic, told me that as soon as he comes home from an exhausting day of work, he enjoys lying down on the floor, while listening and singing along to music. (1982)
I was glad to hear that many of my participants’ teachers encouraged their disabled students’ passion for music, and motivated them to keep singing, despite not always being able to follow the songs’ paces. Although Ben told me that he does not like to sing alone in front of ~ 143 ~ other people, he too enjoys it in a choir, and explained that it helps him practise his spoken English, which is the same thing Evan reported. Through music, both believe to not only have expanded their vocabulary, but to have learnt to speak more clearly and quickly, and generally be more confident in their pronunciation. Henriksson-Macaulay writes that studying music from an early age on can help children “develop bigger vocabularies, a better sense of grammar and a higher verbal IQ”, which aid their acquisition of both their mother tongue and further languages. She further stresses music’s ability to train correct pronunciation. (2014)
Although it is generally easier for people to remember words, if they are accompanied by music, the apparent good memory of many people with cerebral palsy again seems to aid my main participants’ passion for music, as they proved to remember lyrics very easily. (Myers, 2012) Aaron could still recite lyrics he sang in kindergarten, while Greg was the only one of his class to know an entire song by heart which his peers still needed their lyric sheets for. Fiona was the quickest to remember the rhyme Mrs Johnson did with the whole group, and could recite the entire piece while her peers still needed the odd peek at their sheets.
This passion and forte is important to be aware of for any teacher of a cerebral palsied child, as they can gain great benefits from including music in their lessons, and thus help not only their disabled student’s learning progress, but also their passion for languages, and whether they connect them simply with complex grammar rules or fun, dynamic language.
5.6.5. Technical aids and practical support
„Durch eine optimale Versorgung mit einem Hilfsmittel wird die Lebensqualität verbessert und die Integration in die Gesellschaft ermöglicht. [Optimal supply with an auxiliary agent improves the quality of life, and enables the integration among society]“ (Schwarz, 2007, p. 28) Although research suggests that Austria is slowly moving towards a better distribution of technical aids among integration classes, as Aaron and Chris were able to find out through their foreign seminars, England seems to be one step ahead of Austria, when it comes to supporting disabled children in their academic life. (Panzavolta, Lotti, & Engelhardt, 2014) They reported how disabled students learn to work with all sorts of modern technical aids, from computers and special computer programs or websites, like the one Aaron told me about, to tablets, talkers, and other gadgets, which may serve as mouthpieces for non-verbal or severely speech impaired students, or simply help them participate better in class. Chris told me that such support is easier in England, as they have got the necessary private sponsors, which Austria is lacking. ~ 144 ~
The Austrian ministry of social affairs’ website claims that additional expenses that accrue due to a person’s disability can be refunded by the state by up to 100%. (“Arbeit und Ausbildung,” n.d.) However, Van Saanen’s research, as well as my own, suggests otherwise. While she found many people to complain about the lack of financial support in Austria, my own participants mostly had to account for all extra costs, such as their assistant and personal computer, themselves as well. Some financial support was mostly only granted after time- consuming application processes. (2011) While Save the Children implies that this is still the case in most countries, Hopkins writes that the United States are forerunners in including assistive technology in schools, and providing disabled students with the extra financial support they require. (Hopkins, 2004; Save the Children, 2002)
It must be said, however, that, despite Austria seemingly lagging behind in their support for disabled students, the positive school experiences I was able to hear about and witness showed me that enough support is already available, in order to successfully include a cerebral palsied child in regular school, and allow for them to follow the curriculum, with some special arrangements in spatial allocation and time management, which Van Saanen’s findings again support. (2011) Ben, and especially Chris and Dan, worked almost exclusively with computers, for which they had special keyboards that catered to their needs. Dan’s school had no elevator, so they converted the arts and crafts room into his classroom, and his parents bought a stairclimber for the times he did need to get upstairs, as, for example, for his informatics lessons.
I believe it is fair to conclude that Austria has already come a long way, but significant changes must still be made in the future, and more practical and financial support for disabled children and their parents must be provided. As a social state, Austria must not forget about the people that need its help the most. Due to modern technical aids, disabled people are now able to enjoy an independence and prospects hitherto unknown. Some of them still cannot make use of these aids, though, because, as of 2013, disabled people remain not to be a relevant party in most ministries’ budget plans. A welfare state that received 1.9 billion Euros in aid money from the EU in 2012 should, however, be able to provide its disabled citizens with the necessary tools that allow for them to live up to their academic potential. (“2013: Kein Geld für Menschen mit Behinderungen!,” 2013; Radl, 2014)
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5.6.6. The four language skills
Having talked about various things that influence education and also language learning, I will now concentrate more intently on the latter, by focussing on the four language skills, and discussing how my participants were able to tackle them in spite of their disabilities.
5.6.6.1. Listening
For some time in elementary school, Aaron had a male teacher, whom, he told me, it was a lot more comfortable working with, as he understood him better, and felt more relaxed in his presence. Yet, he also told me that he does not have any preferences when it comes to male or female teachers. Why then might he have felt so much more comfortable and at ease with his male teacher? The answer could be simple. It might just be out of personal preference and sympathy. As was mentioned in section 2.3.4.1., though, some cerebral palsied people struggle with hearing higher pitches. (Johannsen & Rennhack, 1982) Considering the fact that Mrs Miller does possess a high pitched voice, it can be assumed that the male teacher’s lower, and thus to Aaron better intelligible, voice could possibly have affected this situation.
Although all of my other participants claim to have perfect hearing, all of them have got issues with some of their senses. Fiona, for example, struggles with spatial perception, while all of them struggle with seeing and speaking clearly. Aaron’s parents and Dan have told me that they believe other senses to develop stronger if some are impaired, which current research supports. (Pernsteiner, 2010) The most well developed sense in all of my participants seems to be their hearing, which consequently aids good listening competences. As most of them are not able to read, they had to receive all of their knowledge auditorily, without being able to rely on any written notes. Evan told me that he is lucky to be a good learner by hearing, as he would otherwise have struggled in school. He does, however, obviously have more practise in learning by hearing than his peers, who always knew that they could look things up in their books, if they had not listened to the teacher, while Evan remembered almost everything he had to know for his exams simply from his lessons, and rarely asked his parents to read his assistant’s notes out to him at home. This again shows the amazing memory cerebral palsied children seem to have, and how beneficial it can be to their academic life. (Feldkamp & Matthiaß, 1988)
The effects of never having read or written a lot do become apparent, however, in my writing participants’ issues with spelling, and Evan’s issues with grammar, as he still struggles
~ 146 ~ especially with the English tenses. Yet, his example proves everyone wrong who doubted that one could learn a language well despite not being able to read or write. (Nagel, n.d.) By listening to a lot of music, and watching movies and shows in English, Evan, Ben, Chris, and Dan have managed to improve their English despite never having read a book or written more than one page at a time.
Fiona is, of course, a different example, as she is the only one of my participants to have a learning disability. Therefore, her language classes are different to the other ones I have seen and heard about. She cannot simply learn and understand by hearing something, and also needs further German explanations for many tasks, which is why, apart from Mrs Burns (see section 4.3.), her English teacher was the only one out of the ones I have seen and interviewed who used a lot of German in her lessons. The use of the students’ mother tongue in foreign language classes was condemned for more than a hundred years, with the explanation that too much of it inhibits the process of language acquisition, and keeps students from experiencing as much of the L2 as possible, be it passively, by listening to the teacher, or actively, by talking themselves. However, although experts and other people are still debating on whether the use of the students’ mother tongue is beneficial to their learning process, recently the predominant attitude seems to be more in favour of some usage of it. (Timor, 2012)
While the Austrian curriculum for secondary language education advises teachers to use as little of the students’ mother tongue and as much of the target language as possible, especially in lower grades it is often necessary to explain certain things in the class’ mother tongue, in order to prevent the lesson from stagnating, and assure that every learner understands the task they are asked to fulfil, or the new grammar rule that is presented to them. (Bundesministerium für Bildung und Frauen, 2004; Prodromou, 2002) Students with language disabilities, whom Fiona has in her group, will find it especially hard to acquire a second language mindset, as they already struggle with their first one. Mrs Johnson told me that, although Fiona does not have a language disability as such, hearing most explanations in German as well does help her understand tasks and rules better, as her English language level is not high enough yet to fully dispense with her mother tongue.
5.6.6.2. Speaking
Conveying one’s knowledge has been proven to help strengthen it in the learner’s mind. (Murphy Paul, 2011) However, it is of particular importance to let cerebral palsied children speak as much as possible, as it can change the way they perceive the world around them. As ~ 147 ~ was mentioned in section 2.3.5.5., allowing for them to translate their world into words makes them more receptive and critical of it. (Bläsig, 1982) Furthermore, the child learns to put what they want to say into meaningful, understandable words that listeners can relate to. Although writing would potentially be a productive alternative to speaking, my empirical research has shown that people with cerebral palsy often cannot write at all, or very little and slowly, which other studies support. (Mike, 1995) Thus, speaking, although often strongly affected by their disability as well, can become their only means of conveying a large amount of content and knowledge. It is therefore vital for teachers, peers, and other fellow human beings to give their disabled children, students, friends, and acquaintances the opportunity to speak and be heard, as they may not be able to properly express themselves otherwise, but certainly feel the desire and urge to do so. (“Communicating with People with Cerebral Palsy,” n.d.)
People with cerebral palsy themselves should, on the other hand, also recognise that it can in fact be very difficult to understand them at times. Aaron stopped doing speech therapy during elementary school, not deeming it necessary anymore, since he could speak and felt that people nowadays should be open-minded enough to take their time to properly listen to him, and concentrate well enough to be able to understand him. I believe him to be right in demanding to be given the chance to speak to and be heard by people, and my research has shown that anger is not an unusual reaction towards communication problems, especially of young men with cerebral palsy. (Capability Scotland, 2012) However, I personally find Aaron’s viewpoint to be too strict, and must admit that it created some tension during our interview, as I was nervous about not understanding, and subsequently upsetting him. In order for interpersonal relationships to be pleasant and relaxed, it is important to feel like one can be open with another person. (Thind, 2016) As all of my other participants were very sympathetic towards people struggling to understand them, I dare to link this to Aaron’s reported neglect and underestimation during his school time, as it can lead to long-lasting anger and frustration. (Garvey, 2016) For all of his most formative years, Aaron was used to people not listening to him and not even trying to understand him, so that he seems to have developed a certain anger towards such incidents. My other participants, however, have always found at least some attentive listeners during their school time that gave them the feeling of being appreciated and respected. Even Evan, who was also an outsider among his peers, found the respect he longed for in his teachers, and was content with it.
Although my participants’ speech problems had clearly recognisable common features, which were already explained in section 2.3.4.2., and include the inability to control the formation of ~ 148 ~ voiced and unvoiced sounds, as well as uncontrolled vocalisation, they did also show many differences in their speech issues. (Johannsen & Rennhack, 1982) Dan, for example, struggles with the German [r]-sound. Evan cannot produce [ʧ]- and [ʤ]-sounds and struggles with the English way of pronouncing the [r], which Dan and Chris can do very well. Ben is unable to produce [s]- or [ʃ]-sounds, which Dan’s former assistant Julia told me he can produce if he concentrates, which he does sufficiently when speaking English. During our little English chat, I witnessed this phenomenon, which proves that learning foreign languages can actually be beneficial to cerebral palsied people’s speech, as they learn to focus more on what they are saying and how they are saying it, and thus consciously practise good pronunciation, which can be more complicated in the mother tongue one speaks without thinking about pronunciation as much. Further research supports the assumption that children with speech and language difficulties benefit from learning a foreign language, as it encourages better language awareness, and also suggests that they usually enjoy it, which my own empirical research strongly supports. (“Additional Needs: Teaching learners with speech, language and communication difficulties,” n.d.)
I have already written about the effects nervousness can have on cerebral palsied people’s academic performance. (see section 2.3.4.2.) While it can make them suffer from the same things non-disabled students complain about and, despite their otherwise good memory, make them forget things they previously knew (as reported in sections 4.5. and 4.6.), especially their speech can be gravely affected by it to a degree that makes them almost unintelligible. (Quinn, 2016) I myself was not able to understand everything my brother said in a televised speech, during which he was nervous. An interesting discovery during my research was, however, that nervousness does not manifest itself in the same way in every cerebral palsied person’s speech, as it enhances the respective disability’s symptoms. (Schwarz, 2007) Consequently, Aaron, Ben, Dan, Evan, and Fiona told me that they become stiffer when nervous, and their bodies tighten up, while the speech of my hypotonous participants Chris and Greg becomes even less powerful, and more slurred. One thing nervousness always is, however, is restricting, which once again highlights the importance of a good, relaxed class atmosphere in order for the cerebral palsied student to be able to show their full potential, speak as clearly as possible, and remember vocabulary relevant to their communicative situation. (Doroftei, 2015)
As calmness alone does not cut it, however, apart from Aaron, all of my participants still did and do some speech exercises throughout their secondary education, and told me that they ~ 149 ~ realise their necessity, which simply cannot be denied, as they have not only helped them become more intelligible, but have also shown them ways of substituting sounds they cannot produce with easier ones that still leave them intelligible, such as Chris’ substitution of [θ]- and [ð]-sounds with [f]- and [v]-sounds. While an unintentional replacement of phones is not desirable and should be treated, my participants’ replacements are done intentionally, and not caused by a perceptual disorder. (Bowen, 2015) During our interview, Evan exhibited another great way of helping himself out when he struggles to pronounce a word, which is by using a synonym that comes easier to him. This is fascinating, as it shows how cerebral palsied people’s great memory can aid their speech impairment. Due to Evan’s vast vocabulary, he does not need to use certain words anymore and can choose between several ones. Mrs Johnson and Dan’s parents also told me how beneficial their student’s and child’s good memory is to their language competence. Although especially Fiona and also Evan do sometimes struggle with grammar, they are intelligible and can express many things, because they have got the necessary vocabulary, which is, as Mr Friend said, the main thing when it comes to simply making oneself understood in another language.
5.6.6.3. Reading
As cerebral palsy mostly affects one’s entire body control, and thus also the controlled movement of the eyes, many of my participants cannot read at all, or only very slowly and with great effort. (“Communicating with People with Cerebral Palsy,” n.d.) It is very important for people, especially teachers, not to forget that this is not necessarily due to a lack of intelligence or a language disorder, but often merely a physical problem. (Shafer & Moss, 1998) Evan cannot read a sentence within an hour, as he jokes, but proved to be smart enough to graduate grammar school and study at university. Fortunately, their inability to read was no problem at school for any of my participants, as they always had the opportunity to receive subject matter auditorily, be it via simply listening to their teachers during lessons, or having someone read out tasks and notes to them, as well as via watching documentaries or online videos.
All of my participants, even the ones who have learnt to read, are affected by some type of visual impairment, usually shortsightedness, which makes it important for them to sit at the front of the classroom, so that they can have a better view of the board and also hear their teacher better, as hearing is often their primary means for information intake. (“Classroom strategies for Regular Education Teachers who have students with visual impairments,” n.d.)
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As Chris still struggled to read from the board at the front, he was given an extra worksheet with everything Mrs Adams would be writing on the board during the lessons. Many participants also required enlarged fonts on their computer screens and keyboards. Ben also told me that he occasionally requested the monitor to be put closer to him. Thanks to their well-informed and supportive assistants and teachers, these things were no issues at all and quickly resolved, so that my participants could work productively.
Another important detail most teachers seemed to be aware of is that, despite their visual impairment and strong focus on auditory input, images can be hugely beneficial especially to a young cerebral palsied student’s learning success and memory of certain things, as it enhances their visual representation of things. (see section 2.3.5.5. and Bläsig, 1982) Mrs Johnson, Mrs Kind, and Mr Twist use books with plenty of colour and imagery, such as Gerngross and Puchta’s Playway 4 (2009), while also including drawings in their worksheets and writings on the board, and gestures in the general lessons. I believe it is fair to assume that, although Aaron cannot read, he too could have benefitted from being able to properly see what was happening at the front, and could have taken in better visual information, which was difficult in the back, due to his shortsightedness.
5.6.6.4. Writing
Aaron and Evan are the only ones out of my participants, who cannot write at all due to their lack of physical control. Unfortunately, although he still had better control over his body during elementary school and parts of secondary school, Aaron never had the chance to learn how to write, as his school did not invest in the necessary technology that might have helped him (i.e., a computer) and his parents could not afford it. Evan too had to do without any technical aids to express his knowledge in a written way. This lead to many people questioning his right to attend and graduate a secondary school, as he lacked an entire area of active involvement in his academic life, and thus an important evaluation criterion. I have expressed my opinions on this topic before, and remain to view Evan’s success story as the prime example of how important it is to give people with cerebral palsy the chance to prove their intellectual potential, as it can significantly change their life for the better and fill it with more meaning. “For people to lead truly flourishing lives they need to feel they are personally satisfied and developing, as well as functioning positively in regard to society.” (Shah & Marks, 2004, p. 5) In order for disabled people to find happiness, society must, among other
~ 151 ~ things, also allow them to receive the education they are intellectually qualified for; which is after all their determined human right. (“Allgemeine Erklärung der Menschenrechte,” 1948)
It is true that when integrating a disabled student with any kind of difficulty teachers will probably have to adapt their styles of instruction and methods of evaluation to some extent, and certain special arrangements will have to be made. For my writing participants this meant, for example, the allowance of extra time. For Evan it meant not having to write at all. This does not mean, however, that my participants were graded more tolerantly, as this would have stood in the way of their full integration and equal standing among the class. As Chris himself told me, his teachers made sure to let his non-disabled peers know that, although he was being assessed under different criteria, nothing was made easier for him, and he did not enjoy any advantages over the rest of his class. Considering their motor impairments, it would have been unfair to my participants to grade their writing in the same way as their non-disabled peers’. As was already mentioned, fairness does not always mean treating everyone in the same way as a teacher, as different students come with different requirements and abilities to prove their knowledge. (Curwin, 2012)
Although Dan told me that, due to his nervousness, he sometimes left out silent letters, his teachers did not oversee such mistakes with the excuse that nervousness might affect cerebral palsied people’s performance more so than others’, which he would not have wanted. All of my main participants did, however, often need more time and specific writing aids. As I have mentioned, Dan’s keyboard was not only made out of rubber for some time, but, like my brother’s, also possessed enlarged letters, so that he could better see them, which, however, due to his good memory helping him out again so that he could remember the location of each letter, he did not require anymore after a while. Occasionally, my participants’ friends also had to lend them their notes, if they could not follow the lesson’s pace. This was especially the case if something had to be written down from the board, as my participants struggled both with reading it, as with writing it down.
Fiona and Greg are the only two of my participants not to have any issues keeping up with their peers during language classes, as Fiona is teamed with academically weaker students, while Greg’s slight physical deceleration probably does not figure yet, due to his age and his peers needing some time to complete their writing tasks as well, which is a time he always uses well and usually gets to work straight away, as Anna told me. Due to Fiona’s hemiplegia and Greg’s moderate diplegia, they are also the only two of my participants who write in pen
~ 152 ~ and not with a computer. Fiona even told me that she hated writing on a keyboard, as trying to hit specific keys made her entire body tenser. This further proves the importance of taking the time to get to know each individual student as a teacher and catering to their specific needs, rather than doing what one feels would be right according to the general type of disability they have got. (“Communicating with People with Cerebral Palsy,” n.d.)
Dan’s teachers tried their best to support him and help him improve his writing, so that he can now use a computer effectively at work, while Ben’s teachers often had him dictate things to his assistant rather than write them down himself, wanting to save time. While dictation is a good technique to be using as an exception, if there are no technical aids or power available, which happened to Dan once, I believe that during the general language lessons it should be renounced at all costs, as it robs the student of the possibility to improve their writing skills, which might not be great at first, but Ben’s (since his parents practised with him at home) and Chris’ examples show how much can be achieved with regular hard work, as they can now chat to me over WhatsApp independently, without needing help from assistants, whom Aaron and Evan still fully rely on. Dan can navigate through the internet on his own, and does not need anyone’s help either, which makes him more independent when he is at home and enjoying his free time. (Bochek, 2016)
5.7. Conclusion
In conclusion, it can be said that there are many similarities between my seven cases, but each of them also demonstrated significant differences. It is ironic that Aaron, my participant with the highest level of English, had the worst language learning experience of all of them and still feels insecure about using his English. If we look at Aaron’s and my six further main participants’ examples, it becomes clear how important it is for a teacher and assistant to not only know enough about their student’s general disability and what it entails, but also the specific, individual student themselves. In order to be able to best support and fairly grade them, a teacher and assistant must not only be fully committed to their job and willing to get to know the student’s limitations, but especially if there is a physical disability, which things it influences and in what way. Although Austria’s new teacher training, launched in 2015, is likely to help future teachers in attaining a certain level of knowledge about and expertise in handling disabled students, it must not be forgot that a child is not simply their disability, and every student comes with different characteristics and learner needs. (“Communicating with People with Cerebral Palsy,” n.d.; Schorn, 2014) Although I had assumed her to have an
~ 153 ~ educational advantage, I was not able to detect significant differences between Mrs Kind’s handling of Fiona, and the social workers’ handling of their students, as the latter too mostly seemed to have been and be well informed about their students’ disabilities and characters, and how to best assist and encourage them, supporting the suggestion that no “’special skills’” are required to optimally assist a disabled student. (Save the Children, 2002, p. 19)
A teacher’s job is to motivate young learners to achieve their best. Although it is not advisable to awaken unrealistic expectations that may lead to future disappointment, neither is underestimating a young learner and stifling their ambition, as people often manage to achieve more than others might have expected. Not believing in one’s student can have serious consequences for their future life, and standpoint towards themselves and their intellectuality. (Boaler, 2016; Tartakovsky, 2016) Chris never wanted to get a high school diploma and is happy with what he is doing now. Evan, on the other hand, is still thriving in his education and finds great joy in it. Teachers need to recognise their students as individuals, and discover their individual aspirations, strengths, weaknesses, learning styles, and needs for assistance. (Lamb, 2001) A disabled child, like any other, thrives best when given the opportunity to work to the best of their abilities and motivations, but will stumble and, as seen with Chris’ example, struggle with their limitations, if too much is asked of them and they cannot meet other people’s requirements. It is important to let them, and students in general, set personal and realistic goals that trigger intrinsic motivation in them to study and learn, and thus reach their respective ideal L2 self one day, and then support them on their way of reaching it. (Brown, 1967; Dörnyei, 2009; Kunert, 1982; Thompson, 2014)
As we have seen, such support does not end with allowing a disabled child to be part of a regular language class. Practical measures must be taken as well. Regular therapy and the right kind of operation have proven to potentially make a huge difference to the everyday school life and academic success of a student with cerebral palsy (see section 2.2.4.1., as well as 4.5. and 4.8.). When it comes to their school routine as such, most of the time they will also require an assistant, as well as technical aids and further practical arrangements. (McKeown, 2004; Mike, 1995; Save the Children, 2002) While an assistant will be needed for more or less things, depending on the severity of the child’s disability, and some of my participants needed theirs first and foremost just to go to the toilet and change clothes, technical aids and further auxiliary agents, such as a computer, a specialised keyboard, and desks high enough for a wheelchair to fit underneath, were needed by most of my participants. If necessary means were not already present in the schools, the respective procurements and ~ 154 ~ expenses had to be attended to and covered by the students’ parents entirely, which Austrian parents of disabled children in general have shown to deem unjustified, considering the fact that they are part of a social state. (see chapter 4 and Van Saanen, 2011)
With regard to language classes in particular, further arrangements had to be made by most schools that went from allowing their disabled students more time to complete written tasks and exams, to letting them accomplish longer exams orally, even if their peers completed them in written form. Such arrangements were not always met with approval by all teachers. However, with the help of many supportive teachers and school principals, most of my participants were able to enjoy a language education that left them fully satisfied and well instructed. Although not all of them were able to meet all of the criteria defined in the curricula for foreign language teaching, as some could not read and write well or at all, they were able to prove their belonging among their fellow language learners via oral output, through which they were able to demonstrate their often above average vocabulary and general memory of facts. (Bundesministerium für Bildung und Frauen, 2004) Although all of my participants have a mild to severe speech impairment, this was mostly no issue, and the vast majority of people they encountered throughout their school careers learnt to understand and communicate well with them, so that they remained to be enthusiastic about speaking, and foreign languages remain to be a passion for all of my main participants with positive school experiences.
My research has shown that a lot of progress has already taken place in disabled people’s standing among society, and it is now easier for them to attend regular schools than it was only twenty years ago, when the Austrian School Organisation Act first determined that disabled people were to be taught alongside non-disabled ones for all nine years of compulsory school education. (Van Saanen, 2011) However, there is still some way to go until the point where disabled people can enjoy absolute social integration and equal opportunities. Some of my main participants were still confronted with much doubt and rejection, be it from the part of their peers, as well as their teachers, which has left traces in their personalities. I was able to detect that those of my participants who were shown respect and allowed as much independence as possible in their homes and schools have grown into mature and confident men with the desire for as much independence as they can acquire through hard work and therapy. Furthermore, those participants were also more understanding of non-disabled people’s standpoints and their possible difficulties in interacting with them.
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It is important to trust and allow for disabled people to handle as many things as possible on their own, and not belittle them. (Kunert, 1982) Mr Friend told me that this can be hard when they are on the verge between childhood and adulthood, but especially during this complicated time in a young person’s life, it is of utmost importance for them to be allowed their first feelings of adulthood and independence. Even with severely physically disabled and thus dependent people, such as Aaron, this can be achieved by paying attention to what they have to say, and valuing their opinions and standpoints, as Aaron himself is in fact very political and has got a lot to say. (“Communicating with People with Cerebral Palsy,” n.d.) Mrs Miller not believing in his ability to ski and ordering him to confess his lie was a humiliation that still resides with the now grown man, and remains to anger him. Aaron’s experiences have made him sceptical of other people’s prejudices towards him, leading him to easily become agitated when he feels underestimated due to his disability. This hinders his social relations, and makes it hard for him to trust people. It is imperative for society to take people with cerebral palsy seriously, in order for them to be able to thrive by developing the necessary confidence and self-belief. (Khan, 2015)
My research has shown that this self-belief seems to lead students to participate better in school, and further their education afterwards, as they believe in their own abilities to achieve something through academic endeavours. (Danglli & Abazaj, 2009; Dörnyei, 2009) Supporting linguistically gifted cerebral palsied students like Evan is incredibly important, as they might not even consider their possible potential, due to their speech impairment and communication already being difficult in their first language. Linguistic self-confidence has proven to play a great part in my participants’ success in learning and actively using foreign languages. (Dörnyei, 2009) Although Aaron surely speaks the best English out of all of them, he shied away from using it with me, while my other participants used as much of it as they felt comfortable with, and told me everything they could in English. All of the former students among them also continue to engage with English and expand their knowledge, even if they are unaware of it, like Ben, who told me that he unfortunately does not study English anymore, later on, however, revealed that he likes to watch films in English and discover English songs’ meanings. Dan has managed to build the confidence to immediately use any newly acquired language knowledge with anyone, and does not shy away from making mistakes. He generally likes to meet new people, and told me that the closeness to his clients is what he most enjoys about his current job in a post office.
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I believe Dan’s fearlessness to be down to the fact that he was always accepted the way he is, and never made to feel embarrassed for any of his shortcomings and weaknesses. In order for disabled people to be optimally integrated and fulfil their maximum academic potential, it is important for their peers to accept and respect them just as they are, and for there to be a positive and inclusive class atmosphere. As Evan’s example has shown, finding true friends among one’s non-disabled peers is not absolutely imperative for academic success and an enjoyable school career, as he built a great connection to some of his teachers, yet, all of my participants with good friends among their peers have formed very close bonds with them, and gained not only social confidence, but also academic motivation from these relationships. Chris told me that he was accepted by his peers before he could even fully accept himself, and their equal treatment of him empowered him to stand up for what he wanted in his life. Fiona’s friends reportedly help her stand up to bullies during school breaks, make her feel more secure, and further her participation during lessons. (Carroll, Houghton, & Lynn, 2013)
There was no difference in the dynamics between disabled and non-disabled students in urban, suburban, or rural schools. A decisive difference, however, seemed to be that the children had met each other at a very young age. As I have mentioned before, getting to know someone at an age where social prejudices are not yet embedded in one’s mind will most likely allow for true friendship to blossom between two seemingly different children, who might find that they have similar interests and a lot to talk and laugh about. (Quartano, 2011) Evan was not given this chance by his peers, whom he met at the age of 14, and who probably already had certain reservations about the seemingly very different disabled kid they had previously only seen on occasion and from afar, but knew nothing about. It is important to allow for young people to really get to know their disabled peers before they are tempted to put them into certain pigeonholes without giving them the chance to prove their qualities as human beings and personal friends. In order to encourage this open, mutual approach between students, it is imperative that disabled people are integrated as early as possible, so that non- disabled children, as well as disabled ones, may grow up to understand that people with disabilities are an equal part of society, and belong amongst it just as much as people without disabilities; and not out of some need for charity, but because they have value and can be a significant enrichment in anyone’s life, and because it is their human right to take part in general society and receive the best possible education. (“Allgemeine Erklärung der Menschenrechte,” 1948; Imprimerie Nationale, 2005)
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6. CHAPTER 6: CONCLUSION
6.1. Main findings and practical implications
A total of 27 students, parents, teachers, and assistants agreed to take part in this study by letting me interview and also observe some of them. This study has contributed to the fields of Disability Studies and SEN (i.e., Special Educational Needs) Research by exploring the linguistic potential of people with cerebral palsy, and how they can be supported optimally in general education and language education in particular. Furthermore, it is hoped that a look at what can be done to encourage their successful integration among their non-disabled peers might support educators in encouraging positive interpersonal relationships among disabled and non-disabled children.
6.1.1. Social integration
It has been found that early integration and exposure to different forms of ability can encourage children’s acceptance of them. (Quartano, 2011) Thus, the inclusion of disabled children among non-disabled ones should start as early as possible, desirably when they enter kindergarten, and be furthered by authorities and educators throughout their pupils’ entire educational career. Luckily, Austria is already seeing a rising trend towards full social integration of disabled people with the slow abolition of special schools and pure special education teachers. (Mittelstaedt, 2014; Schorn, 2014) This means that the idea of every disabled child being furthered according to their intellectual and physical abilities, and at the same time growing up among their non-disabled peers, is more tangible than ever today. As was already explained, however, the local integration of a disabled child in a mainstream school does not solve all problems, and further steps might have to be taken by teachers, assistants, and possibly the child themselves. As my research has shown, there is a lot the disabled child can do to encourage their own inclusion among their peers. Dan, for example, would talk openly about his disability to any new class members, and thus break the ice himself and initiate relaxed and open interactions that turned into friendships.
Not every child is as confident as Dan, though, and someone like Chris might need their teacher’s or assistant’s support in connecting with new people. Although it was found that teachers cannot always influence their students as much as to evoke true friendships, if the students do not wish to engage with their disabled peer, my own study and further research have shown that teachers can absolutely influence positive social behaviour among their ~ 158 ~ students. (see section 4.6. and Eichhorn, 2013) Therefore, it is important for teachers of disabled children to be aware of their own responsibilities, and the power they can have over student behaviour and relationships. First of all, a teacher should live by example. This means that they should not treat the disabled student as if they were drastically different from their peers, as this might encourage students to view their new peer as too different to become an equal member of their group. (Martinez, 2014) Secondly, as Mr Friend explained, talking directly to one’s students can have positive effects as well, and encourage them to rethink their actions and act more respectfully in the future.
In conclusion, it can be said that every person involved in the everyday school life of a student can have an impact on their attitudes and behaviour. However, these influences are also bound by limitations, and a teacher, as well as a disabled student, must accept that there is only so much they can do in order to influence their fellow human beings’ mindsets. The only thing that can truly shape a person’s view of the world and the people around them from within and not some outside force’s indoctrinations is how they experience the world when they are very young. During kindergarten, which comprises a child’s most formative years, their outlook on the world is still being formed, and true acceptance of physical and mental difference can be trained by the kindergarten teacher, and internalised by the young and unprejudiced child. This is where true social inclusion must start in order for non-disabled people to not just accept their disabled fellow human beings out of charity and good conscience, but because they have grown up amongst and grown emotionally attached to people with different forms of abilities, and consider them true and equal friends in their lives.
6.1.2. General and language education
Adequate education is vital for young people, and moreover their inherent right as citizens of this society. In order for disabled people to become truly equal parts of this society, it must allow for them to receive the education they are qualified for. We have learnt that cerebral palsied people are often only or mainly physically disabled, and capable of participating in regular education. Although a higher degree of physical disability is often accompanied by a higher degree of mental disability, this present study has proven that even a student with a disability degree of 100% and a care level of 6, which is the second highest, can acquire high English proficiency. (see section 4.6. and Krenkel & Bröcheler, 1982) Of course, not every student with cerebral palsy possesses the intellectual potential to attend university, as not every non-disabled person does either. However, seemingly all but one of my participants
~ 159 ~ attended and attend the right kind of secondary school, where they were and are able to live up to their potential and enjoy free education like their fellow citizens, which seems to have turned them into happy, grateful, and reasonable young people.
In respect to language education in particular, it was found, however, that various forms of practical support, such as the use of a computer, possibly a specialised keyboard, and almost always the help of a personal assistant, are usually indispensable for the student to be able to participate successfully in their lessons. This draws attention to a big issue prevailing in Austria. The only or main thing still standing in the way of many schools’ optimal support of disabled children is a lack of financial funding. This area still needs to see big changes, and more importance should be put on the wellbeing and support of those people that need this state’s help the most. Austria must learn to distribute its financial means in a way that allows for disabled people to receive adequate help in order to fulfil their academic potential without their parents having to fight tirelessly for each grant and aid, or pay everything themselves. (Van Saanen, 2011)
Upon including a child with cerebral palsy into mainstream language education, further special arrangements will most likely have to be made by the school that are not dependent on its financial means. They may range from allowing the child more time to complete tasks, to allowing for them to pass exams orally. However, my research has shown that no specific expertise in teaching disabled children is required in order to optimally support a cerebral palsied student on their way of learning a new language. It is important to approach the situation with an open mind, get to know the student as a person, and their specific disability and its implications.
As Mr Friend so confidently explained, “it is the person [that counts].” A student with cerebral palsy will undoubtedly have different learner needs than most non-disabled students, and their educational situation might require different handling in many aspects. However, as Curwin explained, treating one’s students fairly does not necessarily mean treating them equally. (2012) Therefore, it is important for teachers to understand, and for them to further make their non-disabled students understand, that a certain distinction does not imply preference. If every member of the class truly understands this principle and feels like they are being treated fairly, optimal conditions are set for a good class atmosphere, which is essential in any learning situation, has, however, proven to be of particular importance to the learning success of students with cerebral palsy.
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Further measures can be taken to ensure that the cerebral palsied student’s language learning process proceeds as successfully and effectively as possible, and include the incorporation of music and visual impressions. It must never be forgotten, however, that each child with cerebral palsy is not simply their disability, but comes with an individual range of abilities and interests. While some of their strengths and weaknesses might comply with those of many other children affected by the same disability, a teacher and assistant should never assume certain strengths and weaknesses in their student, but first get to know them personally, find out for themselves what comes easy to the respective student and what they struggle with, and then let their knowledge of the disability and its possible ways of treatment, as well as their professional training and expertise in special education, further inform their approach to supporting the child and their individual needs.
A further finding of this research study that is important to know for any teacher working with cerebral palsied students is that linguistic self-confidence, although essential to any language learner, is of particular importance to students with cerebral palsy, who will most likely have some form of speech or even language impairment. (Dörnyei, 2009) In order for the student to be motivated to learn, and believe in their ability to improve and reach their ideal L2 self one day, despite their impairment, it is important for the teacher to install a sufficient amount of linguistic self-confidence in them, which further motivates the learner to study and thus “reduce the discrepancy between [their] actual and ideal selves.” (Dörnyei, 2009, p. 29) Many of the teachers that were interviewed and observed in the course of this study understood the importance of honest praise to further their students’ motivation and self-belief, and many of the former and current students I talked to were grateful for their teachers’ belief in them, and aware of how it motivated them and thus helped them in their endeavour to learn a foreign language, even if other people might not have trusted their ability to do so, simply due to their disability.
In conclusion, it can be said that, by definition, a teacher should always address each of their individual students’ learner needs as separately as the lesson framework allows. (Bundesministerium für Bildung und Frauen, 2004) A cerebral palsied student, depending on the severity of their disability, will obviously need more differentiation. However, being equipped with the new teacher training and an open mind for a new teaching situation and a new set of learner needs in the classroom should suffice in aiding a teacher’s correct handling of such a situation. Special education training is helpful in reducing ignorance and fear of making mistakes in the handling of disabled people. However, teachers should never assume ~ 161 ~ to know everything there is to know about a new student from knowing about their disability. There is always something new to learn and discover about any new student and their individual strengths and weaknesses, which is, after all, one of the beautiful things about the teaching profession.
6.2. Questions for further research
As was already mentioned, there is yet little to no literature that focuses on the topics of social and academic integration from the specific angle that was chosen for this study. This means that a general need for further studies in this area prevails. Moreover, having chosen to do a qualitative case study, this project was subject to certain limitations that range from the apparent subjectivity of the study’s participants, as well as its researcher, to the generalisability of its findings. (Hood, 2009) Future researchers that are less emotionally invested in the topic of disabled people’s rights to be included among general society might contribute different perspectives to the research area. Furthermore, future quantitative studies might provide the field with more generalisable findings that allow for more encompassing hypotheses.
Future research studies could further investigate what might contribute to the failed academic integration of academically strong students with cerebral palsy. They might look at what teachers’ real motivations behind excluding a disabled child from their general lessons could be, and what can be done to change such attitudes and behaviour. This present study speculated that it might be due to a lack of experience with disabled children, and prejudices about their capabilities. It would, however, be interesting to explore this side in more detail, and approach this study’s subject from a different angle, meaning not primarily looking at what can or should be done right, but what can be done wrong and should thus be avoided in order for a cerebral palsied student to thrive in their general and also their language education.
Furthermore, a deeper look at disabled students’ peers’ perspectives and experiences could be taken, which was omitted in this present study. The attitudes of non-disabled students of all ages towards disabled peers could be examined, and the possible reasons for how they have come to adapt their views could be investigated and analysed in order to get a deeper understanding of how non-disabled children who have grown up among disabled children, as well as those who have not, really think about them. Also, a psychologically better informed view might offer interesting new insights in this respect.
~ 162 ~
This present study provided some insights into the possible academic and linguistic potential of cerebral palsied children, and how they can be best supported so that their motor impairments do not hinder their learning progress and participation in regular education. The participants’ openness and frankness allowed us to get a deep understanding of their feelings and thoughts on their experiences with regular language education and integration among non-disabled students. With this study, I hope to have contributed new material to the continuously expanding fields of Disability Studies, and SEN Research in particular.
However, as this section has shown, there are still some unresolved questions and different points of view that would be interesting and relevant for further research. I am hoping that future studies will contribute further information and insights into how cerebral palsied people can best be integrated in mainstream (language) education in order for all people involved to profit from it. I would like to see a world one day in which the inclusion of disabled children among non-disabled ones is not a question of social initiative, but self-evident. I am hoping that studies such as this one can make a tiny contribution to getting there, by enlightening people on the needs and the potential of their disabled fellow human beings.
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LIST OF FIGURES
Figure 1: The human brain ...... 5 Figure 2: The pathological muscle fibre ...... 13 Figure 3: Spastic diplegia ...... 18 Figure 4: Spastic tetraplegia ...... 18 Figure 5: Language ...... 29 Figure 6: Language and speech disorders ...... 29 Figure 7: Divergent strabismus ...... 39 Figure 8: Rubber keypad ...... 93 Figure 9: Terms and illustrations ...... 114
LIST OF TABLES
Table 1: Research design ...... 49 Table 2: My Participants ...... 50 Table 3: Interview frames ...... 56
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APPENDICES
Appendix A: Extract from questions for structured student interviews
The following is an extract of the prepared interview questions for my extensive, structured interviews with five former students. Although they were prepared in English, I asked them in German, if requested by my interview partners. The questions were divided into the following thematic groups: personal data, disability and political correctness, school - integration, school - academics, language classes, the four language skills (i.e. listening, speaking, reading, writing), and retrospect. Things written in grey were added, if the participants did not elaborate enough and I felt like they needed further impulse. Follow-up questions starting with “if so” or “if not” were only added, if the participants did not elaborate on the main questions to the desired extent.
Language classes: - How did you feel about English in school? What did you enjoy most about it? What were your strengths and weaknesses in English? Is there anything in particular that you do not like about the English language or the particular English lessons you had, which made it a less enjoyable subject for you?
- Did your teacher include music and games in their lessons? o If so, how did you enjoy each? - Were you ever scared of anything in particular in your language classes (e.g. the prospect of a presentation, group work, test etc.)? o If so, why do you think you were scared in that particular situation? - What were your average grades in English, and did you follow the general curriculum like your peers?
- Did you have an assistant? o If so, where did you find them, and what did they help you with specifically in your English classes? o What did your class participation look like in English? What did you do on your own? Where did your assistant step in? How much interaction did you have with your English teacher?
- Do you feel that your individual “learner needs” [i.e., your personal requirements to get from A to B; from a state of not having much language competence to having as much of it as YOU aspire to] differed from those of your peers, in respect to your English lessons? o If so, how? ~ 178 ~
- How did your teacher/assistant cope with those differences? - Were you ever or often given more time than your peers to fulfil a task? - Did you ever have problems remembering stuff you were taught in class or elsewhere? - Did you find it hard to concentrate sometimes? o If so, how did your teacher/assistant help you? Were you allowed more breaks than your peers? - Did you ever feel like your peers were jealous of you (e.g. your assistant, certain arrangements for you, study breaks, your competence level)? - Were you ever jealous of your peers (e.g., in respect to their accents, speaking rate, writing etc.)? o If so, why?
The 4 language skills: - Do you have a diagnosed hearing impairment? o If so, how did you deal with it in your English lessons? - Do you have a diagnosed seeing impairment? o If so, how did you deal with it in your English lessons? - How did you write homework, tests, and lesson notes, and how were they graded? o If dictated: Did you do it in class with your peers? Were they not distracted? Was there a method of testing your spelling?
- Have you ever had any speech therapy? o If not, did you ever feel like or did anyone ever tell you that you should have? o If so: in private and/or in school? with whom? What exactly was done? If not done by teacher/assistant: - Did your teacher or assistant ever do speaking exercises or pronunciation training with you? o If so: Only in German or for English specifically too? What did they do exactly? Did you find it necessary? Did you enjoy it or did it bother you? Did you notice specific improvements from your speech training and exercises? - Do you find it harder to speak clearly when you feel sad, angry, or nervous? - Did you ever have issues with speaking in front of your class? o If so, why? - How does it feel when you are nervous or agitated while speaking? - Did you have to do some presentations as well? o If so, were you nervous? . If so, did that influence your speech? - Were your teachers and peers always patient with you while you were talking? - Was everyone in your class always able to understand you? ~ 179 ~
o If not, how did you manage such situations, and did or does it ever frustrate you when people don’t understand you? - Was there ever laughter or whispering in class while you were talking? o If so: How did it make you feel? Did you or anyone else react to it? Was it the same for other students, too?
Appendix B: Extracts from questions for semi-structured teacher interviews
The following are selected extracts from my semi-structured interviews with my participants’ teachers. Again, things written in grey and the follow-up questions were only added, if my interview partners did not elaborate to the desired extent.
- Can you remember, what you thought of X when you first met them? o If so, did that perception turn out to be true? - Had you ever had a disabled student before X? - Was there anything that made you nervous about teaching X? (For example, were you nervous about whether you would manage to treat them as an equal in class or whether you would always understand them?) - Did you have trouble understanding X at first or even later sometimes? o If so, were you sometimes cautious about asking them to repeat their words?
- Did you change anything about your lessons, because of X? (For example, did you avoid certain subjects, or do more, or less group work or presentations because of them?) - What was a typical English lesson like with X? How did the cooperation between you, them, their assistant, and the rest of their peers work during a lesson?
- Who decided upon the mode of their examination, and was every teacher okay with it? - Did you ever question, whether X’s special arrangements were fair towards other students? - Did anyone of them ever complain about them?
- Were you ever uncertain about confronting X with criticism? - How did they react to criticism (compared to their peers)? - Did X ever demonstrate rude behaviour towards you, their assistant, or a classmate? o If so, what were possible triggers, and how did you resolve such situations?
- Was there anything you felt X did not enjoy in your classes? - What do you feel they enjoyed most?
- How well integrated did you feel X was among their peers? Did they have real friends in class? o If not: Why do you think that was? ~ 180 ~
Did X maybe even have some bullies? Did you ever talk to their peers about their behaviour towards them? If so, did it help? - What was the atmosphere in class like when X was talking? (Did their peers wait patiently, or were there any laughter, whispering, or other disturbances from them?) o If the latter, did you do something to resolve the situation? . If so, did it work?
Appendix C: Extract from interview with Evan
E: But in, in English- I made really, ah, few mistakes in my life, I think, but one mistake I did make was- We had- In my second, ah- In the second part of the, ah, secondary school, ah, the- we were two English groups with two English teachers, and I, ah, I vividly remember- On the first day, ah, they s- sp- they sp- p- ah, they sp- sp- they divided the groups, so ah, in an even number, so ah, so they, ah, they, ah, ah, the class in generally* was not so big for* English. So, ah, there was a, a man- a male and a female teacher. The female teacher, ah, was very, ah (( )) very young and inexperienced, and I volunteered to stay with the female, because I was- and this is really true- I was, I was scared of the male, male teacher, because he, ah- because of- because I- I h- had no idea what I should do with a male teacher. But we had, ah- in the 6th grade, due to- because we were the language oriented branch of our school, the language oriented class, they changed, they changed the ge- geography teacher, ah, and I, I got the male English teachers- I got the male English teacher, I am sorry. Ah, and he was the best teacher that I, I ever had. He was of course fluent in English, ah, and he, ah, we were talking to him. ((He imitated)) an Australian, Australian, a Western Australian farmer, so to speak. He could switch between accents. Ah, he lived for- He lived for many years* in the States and was working as a travel agent, ah, in his, in his second job so he was very experienced of course to, to, to, ah, to, ah, use* English of course. Ah, anyway, after the first geography lesson he held this consistently in fluent English, because this is a feature of the branch I attend*, ah, so- And after the first geography lesson I, I was feeling- I was thinking “You dumb-ass idiot! Why had you attende- Why had you chosen the younger, inexperienced teacher?” So, ah- But, ah, fortunately for m- me he was, in the, in the 8th gr- (( )) in the last grade the only teacher, who was available, ah, for, ah, the whole class, because of illness and stuff like that of the other teacher and the- and they do not want- the school administration did not want to bring in a, a new English teacher for one year. So, it was great, ah, this last, last year. I did not graduated- I did not graduate in English, though, but I did graduate in, in, ah, geography, and he said to us “If you- if the-“ The language was of course German, the c- co- com- com- The exam language was of course German, but he said to us, and we were all graduating by*- Almost all of my classmates graduated by* him in geography, except one, but (( )). And he said to us “If you want to begin in English, I will answer you in English and we can, ah, do the whole exam in English.” I, I f, ah- I was thinking about it for a moment, but I, I did not
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do it, but, ah, it was possible. It was also a, ah, also - It was also, all subjects also related to English, which was totally focus of* conver- conver- conversation, no tests. Two extra hours in English for, ah, two years. Only conversation, no tests at all. So, ah, this was language, language, ah, ah, let me think how I translate it in English, ah- language, ah, language, ah- language aktuell. I: Oh, okay. So, ah, contemporary English, maybe? E: Contem- contem- contemporary English, yes. But he was very ((fortunate))* to give me the confidence to speak English, ah, and he told me after he finished me in English for the 8th grade: “You may be not the greatest grammatical genius, but you have the most important thing: vocabulary knowledge. And this is all you need.” So, ah, he was al- He was also- He made a- He made a presentation* for a (( )) at the, at the ministry- at the church- at the local church near our school- He made a presentation* of all his, ah, travels to all different countries. So, this was very- I was very fortunate to say I believed that he, ah, he made me believe in myself and, ah, made me believe in my ability to speak, to speak, ah, English. Ah, unfortunately I am not the greatest grammatical genius, but I am trying.
Appendix D: Extract from narrative from observation in Fiona’s English lesson
J points to another picture with one hand and S4 with the other. S4 focuses strongly on picture and describes it: “The black dog barks.” J asks her to put the sentence into the plural form. S4 seems unpleased, says it wrong, and J corrects her. S4 repeats it correctly. J praises her in English. S4 smiles. J points to another picture with one hand and F with the other. F giggles excitedly and describes the picture: “The sheep eats grass.” J repeats the sentence in an affirmative manner, but corrects F’s pronunciation of the word ‘sheep’, which F pronounced as ‘ship’. F concentrates hard and repeats the entire sentence in a correct manner. J praises her in English. F giggles and looks to S1, who smiles at her. J asks F to put the sentence into the plural. F does it correctly after shortly looking out of the window in a pensive mode. J praises her in English. F giggles and focuses on the picture again. J praises the entire group in German, while collecting the picture cards. After she is finished, she instructs the group in English to turn around their sheets and wipe out their answers. S finishes first and looks to her sheet. J asks her if she is bored. F smiles up at her while continuing to slowly wipe away her answers. S nods in answer to J’s question. F and some other students laugh. J says that they will have to do something different then, collects the worksheets, and takes them away. F chats to S1, they smile, and look to J again. J returns with a book, and explains to her students in German that she has got something new for them. F and S1 look at each other excitedly. S looks to the floor. The rest of the group chat silently. F sits up in her chair and leans forward on her desk in order to better see the book. The rest of the group chats about what the book might contain, and appear genuinely interested. ~ 182 ~
J explains that, as they already know so many animals’ names, she has brought her class a new book that features a large picture of all the different zoo animals there are. F smiles excitedly and is focussed on the book. J opens the book to reveal a large drawing of a zoo, and places it in the middle of the large table, so that every student can see it. They all lean forward and start scanning the picture with big interest and curiosity. J asks into the group: “What’s this place called?” S answers: “Ein Zoo.” J asks: “What?” F quickly says: “A zoo!” J repeats her answer in an affirmative manner and shortly praises her. F smiles to S1. J explains that she wants the class to point at different animals they know and say their names in English. S6 and S7 start to whisper loudly, and J hushes them. They stop speaking, and look at the picture. F grins excitedly and places her finger onto an animal, trying hard to keep it there and holding the hand that points with her other one in order to keep it in place.
Appendix E: Extracts from coding system
The following are selected extracts from the coding system I used to analyse my data. My seven cases were used as main codes, and each incorporated several sub-codes, which encompassed their disability degree, school life, support, social integration, language education, class participation, special arrangements, self-belief, learner motivation, concentration, memory, music, and satisfaction, which were all further divided into several levels of sub-codes. Each aspect was always considered in the context of the students’ peers, teachers, assistants, and parents (if appropriate), and looked at from the perspectives of the students themselves, as well as their parents, teachers, and assistants.
School life:
Mainstream schooling: - obstacles o authorities o teachers o parents - support o authorities o teachers o parents [...]
Social integration: support - peers tolerance o student’s view equality . pos. . neg. friendship ignorance bullying ~ 183 ~
impatience . neg. outsider ignorance o teacher’s view under- . pos. estimation friendship treating support unfairly tolerance o teacher’s view equality . pos. . neg. trust in ignorance student bullying treating impatience fairly outsider flexibility o parent’s view . neg. . pos. ignorance friendship under- support estimation tolerance treating equality unfairly . neg. o parent’s view ignorance . pos. bullying trust in student impatience
outsider treating fairly - teachers flexibility o student’s view . neg. . pos. ignorance trust in under- student estimation treating treating fairly unfairly flexibility [...]
Language education:
Listening: o influenced by peer(s) - impairment o influenced by assistant o help . successful Speaking: . unsuccessful - impairment - no impairment o help . successful - enjoyable . unsuccessful o influenced by teacher(s) - no impairment o influenced by peer(s) o influenced by assistant - enjoyable - not enjoyable o influenced by teacher(s) o influenced by teacher(s) o influenced by peer(s)
~ 184 ~
o influenced by assistant o influenced by peer(s) - not enjoyable o influenced by assistant o influenced by teacher(s) [...]
Class participation: - listening - speaking o pos. o pos. . influenced by . influenced by teacher(s) teacher(s) . influenced by . influenced by peer(s) peer(s) . influenced by . influenced by assistant assistant o neg. o neg. . influenced by . influenced by teacher(s) teacher(s) . influenced by . influenced by peer(s) peer(s) . influenced by . influenced by assistant assistant
o peer reactions . pos. . neg. [...] ______
- single work . influenced by o pos. teacher(s) . influenced by . influenced by teacher(s) peer . influenced by . influenced by assistant assistant o neg. - group work . influenced by o pos. teacher(s) . influenced by . influenced by teacher(s) assistant . influenced by - pair work peer(s) o pos. . influenced by . influenced by assistant teacher(s) o neg. . influenced by . influenced by peer teacher(s) . influenced by . influenced by assistant peer(s) o neg. . influenced by assistant
~ 185 ~
Special arrangements: - time o yes o yes . worked well . worked well . did not work . did not work well well . peers’ reactions . peers’ reactions pos. pos. neg. neg. o no o no . worked well . worked well . did not work . did not work well well - support - quantity o yes o yes . worked well . worked well . did not work . did not work well well . peers’ reactions . peers’ reactions pos. pos. neg. neg. o no o no . worked well . worked well . did not work . did not work well well - exams - quality o yes o yes . worked well . worked well . did not work . did not work well well . peers’ reactions . peers’ reactions pos. pos. neg. neg. o no o no . worked well . worked well . did not work . did not work well well [...] - location
~ 186 ~