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Background to the study
concept of supported decision-making as a paradigm for protecting adolescent girls with intellectual disabilities from involuntary sterilisation in Nigeria. Viability in the context of this study involves an examination into whether or not supported decision-making is practical for all levels of intellectual disability, as well as an assessment of what supported decision-making means to the respondents of the empirical component of the study. It also entails an examination of whether or not supported decision-making includes or excludes substituted decision-making for adolescent girls with extensive and pervasive intellectual disabilities particularly where their will and preferences are not discernable. An examination into the applicability and practicality of supported decision-making in this context is pertinent as adolescent girls with intellectual disabilities are highly susceptible to practices that infringe on their rights to retain their fertility. The study draws on empirical research in assessing the rights of adolescent girls with intellectual disabilities to legal capacity and supported decision-making vis á vis protecting them from involuntary sterilisation.
Explication of terminologies
In this section, the terms adolescent, sterilisation, intellectual disability and legal capacity which are central to this study are explained for better understanding of their contextual use in the study. This is because they are terms that keep evolving over time and/or whose definitions and interpretations remain contentious.
Sterilisation
Sterilisation refers to “surgical intervention resulting either directly or indirectly in the termination” of a person’s ability to have children. It differs from other methods of contraception in the sense that its effects are usually permanent because reversal requires additional surgery which is in many cases is unsuccessful.Surgical methods of contraception such as tubal ligation and hysterectomy are examples of sterilisation procedures for women and girls.
Intellectual disability
Intellectual disability is a term that applies to a diverse group of people and a wide spectrum of disabilities such as Down’s syndrome, Fragile X syndrome, Prader-Willi syndrome and fetal alcohol syndrome, which have no essential causal link. It is generally defined as a disability that occurs before the age of 18 and affects cognitive and adaptive functioning.It is not a ‘static condition’ but an interface between individuals’ abilities and social factors.Intellectual disability is therefore neither a medical concept nor a social concept.
Declaration
Dedication
Acknowledgements
Abstract
CHAPTER ONE INTRODUCTION
1.1. Background to the study
1.2. Explication of terminologies
1.2.1. Adolescent
1.2.2. Sterilisation
1.2.3. Intellectual disability
1.2.4. Legal capacity
1.3. Problem statement and objectives of the study
1.4. Research questions
1.5. Methodology of the study
1.6. Literature review
1.7. Theoretical framework
1.7.1. A Foucauldian perspective
1.7.2. The social model of disability- a functional disability model for persons with intellectual
disabilities?
1.8. Significance of the research
1.9. Scope and limitations of the study
1.10. Overview of chapters
CHAPTER TWO DECONSTRUCTING INTELLECTUAL DISABILITY
2.1. Introduction
2.2. Historic account of intellectual disability in Nigeria
2.2.1. Pre-colonial era (1500-1900)
2.2.1.1. The Igbo
2.2.1.2. The Yoruba
2.2.2. The colonial era (1900-1960)
2.2.3. The post-colonial era (1960 till date)
2.3. Intellectual disability: whither the names, definitions and classifications?
2.3.1. The American Psychiatric Association (APA)
2.3.2. The American Association on Intellectual and Developmental Disabilities (AAIDD)
2.3.4. The educational classification of intellectual disability
2.4. The construction of intellectual disability
2.4.1. Intellectual disability as a clinical construction
2.4.2. Psychological testing and intellectual disability
2.4.3. Intellectual disability as a social construction
2.4.3.1. Labelling of persons with intellectual disabilities
2.4.3.2. Stigma and persons with intellectual disabilities
2.5. Conclusion
CHAPTER THREE EQUALITY AND NON-DISCRIMINATION VIS-À-VIS THE STERILISATION OF ADOLESCENT GIRLS WITH INTELLECTUAL DISABILITIES
3.1. Introduction
3.2. The import of equality and non-discrimination for persons with intellectual disabilities
3.2.1. Equality: What does it entail?
3.2.2. Types of equality and their implication for persons with intellectual disabilities
3.2.2.1. Formal equality
3.2.2.2. Substantive equality
3.2.3. The principle of non-discrimination
3.3. Legal framework for equality and non-discrimination
3.3.1. Equality and non-discrimination in the CRPD
3.3.2. The right to equality and non-discrimination under Nigerian Law
3.3.2.1. The Nigerian constitution
3.3.2.2. Legislative enactment
3.4. Involuntary sterilisation as inequality and discrimination
3.5. Conclusion
CHAPTER FOUR THE RIGHT TO LEGAL CAPACITY AND ITS IMPLICATIONS FOR ADOLESCENTS WITH INTELLECTUAL DISABILITIES
4.1. Introduction
4.2. The notion of legal capacity
4.2.1. Meaning and effect of legal capacity
4.2.2. Significance of legal capacity
4.3. Intellectual disability, personhood and legal capacity
4.4. Traditional approaches to legal capacity
4.4.1. Status approach to legal capacity
4.4.2. Functional approach to legal capacity
4.4.3. Outcome approach to legal capacity
4.4.4 Legal Capacity in international treaties prior to the CRPD
4.5. The CRPD and its conception of legal capacity
4.5.1. The right to ‘universal’ legal capacity in article 12
4.5.2. The CRPD and legal capacity for adolescents with intellectual disabilities
4.6. Legal capacity for adolescents with intellectual disabilities in the Nigerian context
4.7. Conclusion
CHAPTER FIVE SUPPORTED DECISION-MAKING FOR ADOLESCENT GIRLS WITH INTELLECTUAL DISABILITIES
5.1. Introduction
5.2. Unpacking the supported decision-making model of legal capacity
5.2.1. The support paradigm in article 12 CRPD
5.2.2. Supported decision-making: Challenging old standards for persons with intellectual disabilities?
5.3. Supported decision-making for adolescent girls with intellectual disabilities
5.4. Informal supported decision mechanisms for adolescent with intellectual disabilities
5.4.1 Peer support
5.4.2. Circles of support
5.4.3. Micro-board
5.5. Conclusion
CHAPTER SIX EMPRICAL RESEARCH: METHODOLOGY
6.1. Introduction
6.2. Design of the study
6.3. Location of the study
6.4. Population of the study
6.5. Sample and sampling techniques
6.6. Ethical considerations
6.7. Instruments of the study
6.8. Validity of the instrument
6.9. Reliability of the instrument
6.10. Method of data collection
6.11. Method of data analysis
6.12. Time dimension
6.13. Methodological limitations
6.14. Conclusion
CHAPTER SEVEN DATA ANALYSIS
7.1. Introduction
7.2. The Questionnaire for Professionals
7.2.1. Section A: Personal information
7.2.1.1. Question 1: Gender
7.2.1.2. Question 2: Marital status
7.2.1.3. Question 3: Age range
7.2.1.4. Question 4: Educational qualification
7.2.1.5. Question 5: Occupation
7.2.1.6. Question 6: Employment
7.2.2. Section B: Intellectual disability and involuntary sterilisation
7.2.2.1 Question 7: Formal training
7.2.2.2. Question 8: Causes of intellectual disability
7.2.2.3. Question 9: Awareness of situations of involuntary sterilisation
7.2.2.4. Question 10: Attitude towards involuntary sterilisation
7.2.3. Section C: Convention on the Rights of Persons with Disabilities (CRPD)
7.2.3.1. Question 11: Awareness of the CRPD
7.2.3.2. Question 12: Attainment of the information about the CRPD
7.2.3.3. Question 13: Awareness of the concept of ‘supported decision-making’
7.2.3.4. Question 14: Understanding of the concept of supported decision-making
7.2.4. Section D: Legal capacity and supported decision-making
7.2.4.1. Question 15: Right to make medical decisions
7.2.4.2. Question 16: Decision maker for adolescent girls with intellectual disabilities
7.2.4.3. Question 17: Legal capacity
7.2.4.4. Question 18: Intellectual disability, legal capacity and supported decision-making
7.2.4.5. Question 19: Attitude towards support in contraceptive decision-making for adolescent girls with intellectual disabilities
7.3. The Questionnaire for Parents
7.3.1. Section A: Personal Information
7.3.1.1. Question 1: Gender
7.3.1.2. Question 2: Marital Status
7.3.1.3. Question 3: Age range
7.3.1.4. Question 4: Educational Qualification
7.3.1.5. Question 5: Occupation
7.3.1.6. Question 6: Age of child
7.3.2. Section B: Intellectual disability and involuntary sterilisation
7.3.2.1 Question 7: Level of disability of Child
7.3.2.2. Question 8: Causes of intellectual disability
7.3.2.3. Question 9: Awareness of situations of involuntary sterilisation
7.3.2.4. Question 10: Attitude towards involuntary sterilisation
7.3.3. Section C: Convention on the Rights of Persons with Disabilities (CRPD)
7.3.3.1. Question 11: Awareness of the CRPD
7.3.3.2. Question 12: Attainment of the information about the CRPD
7.3.3.3. Question 13: Awareness of the concept of ‘supported decision-making’
7.3.3.4. Question 14: Understanding of the concept of supported decision-making
7.3.4. Section D: Legal capacity and supported decision-making
7.3.4.1. Question 15: Legal Capacity
7.3.4.2. Question 16: Attitude towards support in contraceptive decision-making for adolescent girls with intellectual disabilities
7.4. Discussion of findings
7.4.1. Causes of intellectual disability
7.4.2. Attitude of parents and professionals towards involuntary sterilisation
7.4.3. Attitude of parents and professionals towards legal capacity and supported decision-making for adolescent girls with intellectual disabilities
7.4.4. Viability of supported decision-making for adolescent girls with intellectual disabilities in contraception?
7.5. Conclusion
CHAPTER EIGHT SUMMARY, RECOMMENDATIONS AND FINAL CONCLUSION
8.1. Summary
8.1.1. Chapter One: Summary
8.1.2. Chapter Two: Summary
8.1.3. Chapter Three: Summary
8.1.4. Chapter Four: Summary
8.1.5. Chapter Five: Summary
8.1.6. Chapter Six: Summary
8.1.7. Chapter Seven: Summary
8.2. Recommendations
8.2.1 The need for legislative enactment and reform
8.2.2 The need for awareness raising and sensitisation
8.2.3 The need to provide to support measures and services
8.2.4 The need for research
8.2.5. The need for training of policy-makers and relevant stakeholders
8.3. Concluding remarks
Bibliography
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The viability of supported decision-making in protecting adolescent girls with intellectual disability from involuntary sterilisation in Nigeria
