Abstract
Self-determination is an inherent and indisputable legal entitlement that must be universally available to every individual, irrespective of their physical capabilities. In the case of people who are blind or have low vision, these rights are often challenged. Access to information is a major factor in facilitating choices that align with their goals, aspirations, and meaningful participation in society. This critical review examines the legal, ethical, and psychological dimensions of information access and self-determination for individuals with visual impairments. The legal framework for self-determination and the right to information is primarily shaped by international human rights treaties and domestic legislation. Notably, international conventions such as the Convention on the Rights of Persons with Disabilities (CRPD) and the Universal Declaration of Human Rights (UDHR) provide safeguards to ensure that individuals with visual impairment are afforded equal opportunities for societal engagement, including unrestricted access to information. However, implementing these laws remains challenging in many countries, particularly developing nations. This literature review highlights significant ethical implications of denying individuals with visual impairment access to information, leading to disempowerment and a lack of agency. Psychologically, self-determination and the right to information have been demonstrated as essential factors for the well-being of visually impaired individuals. Depression and anxiety are among the most prevalent mental health conditions in individuals with visual impairment. It has been shown that the inability to make choices that align with patients’ values and beliefs can negatively impact their mental health. A critical evaluation of the cultural and psychological barriers to information access can offer valuable insights into how international human rights treaties and domestic laws can be effectively implemented to safeguard the rights of individuals with visual impairments. The literature is scarce on preventive and early intervention strategies to mitigate mental health issues within this group, highlighting the need for further research.
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Background
Self-determination represents a significant determinant of independence for everyone and is equally essential for people who are blind or have low vision. Individuals with visual impairments (VI) may encounter numerous obstacles in exercising self-determination and full autonomy, including barriers to information access, limited mobility and transportation, social stigma and stereotypes, reliance on caregivers, disparities in healthcare services, lack of inclusive education, mental health challenges, legal and advocacy limitations, technological gaps, and employment discrimination. Access to information is a key requirement for self-determination.
This review addresses several key questions: First, what is the role of legislation in shaping the societal framework for enhancing self-determination among individuals with VI? Second, how can legal and ethical regulations support the psychological aspects of self-determination for this group? Third, how do UAE regulations compare to international standards in facilitating the principle of self-determination for individuals with VI? To critically evaluate the evidence surrounding these questions, this review offers a historical overview of the topic and examines the psychological and legal dimensions of self-determination, with a focus on the right to access information. It then explores the legislative landscape both globally and within the UAE, concluding with detailed recommendations for empowering individuals with VI to exercise self-determination.
Definition
Self-determination is defined as the inherent ability of individuals to autonomously exercise their own volition, free from the impact of external factors such as drives, reinforcement contingencies, pressure, or any other coercive forces (Agran et al. 2007; Brehmer-Rinderer et al. 2013; Gooding, 2018; Köbsell, 2006; Mittler, 2015; Nedovic et al. 2019; Officer and Shakespeare, 2013; K. A. Shogren et al. 2006). It refers to the abilities and attitudes necessary to act as the primary causal agent, make choices free from undue external interference, and pursue goals independently without being influenced by others or the surrounding environment (Al-Quwayfili and Al-Khalifa, 2014). It encompasses the amalgamation of competencies, expertise, and convictions that empower individuals to partake in purposeful, self-governed conduct toward achieving specific objectives.
It has been postulated that self-determined actions are characterized by four fundamental elements: self-regulation, autonomy, self-actualization, and psychological empowerment (Agran et al. 2007). These elements represent a shift from the abstract concept of self-determination to the tangible expression of self-determined behavior, empowering individuals to take proactive steps toward achieving their personal and professional goals. Consequently, the pertinent literature concurs on the affirmative impact of this principle in enhancing an individual’s “quality of life.” (Arnardóttir and Quinn, 2009; Ayoubi, 2012; Basson, 2017; Bruce and Parker, 2012; Frolik, 1998; Gooding, 2018; Gould et al. 2015a; Kanter, 2015; Köbsell, 2006; Kohn, 2021; Lewis et al. 2014; Mittler, 2015; Officer and Shakespeare, 2013; Paré, 2019; Weeraratne et al. 2012).
Supporting individuals with disabilities in developing self-determination requires providing the necessary resources and mechanisms that empower them to take control and make choices that shape their own lives (Agran et al. 2007; Brehmer-Rinderer et al. 2013; Cmar and Markoski, 2019; Gooding, 2018; Köbsell, 2006; Mittler, 2015; Nedovic et al. 2019; Officer and Shakespeare, 2013; K. A. Shogren et al. 2006). Article 19 of CRPD recognizes the equal entitlement of all persons with disabilities to lead independent lives within their communities, exercising their freedom to make choices and exert control over their own lives. This provision is grounded in the fundamental human rights principle that all individuals are born equal in dignity and rights, with each life carrying equal worth. The right to independent living is universally acknowledged as a fundamental human right that encompasses the utmost level of self-determination and social integration, enabling individuals to exercise their freedom in making choices and influencing decisions that affect their lives. The concept of self-determination emphasizes the importance of individuals selecting and pursuing their own goals, actively participating in decision-making processes, advocating for themselves, and striving to achieve their aspirations. Contrary to misconceptions, self-determination does not imply dominance over others; it entails taking proactive steps to fulfill one’s needs and desires. The pursuit of self-determination involves creating favorable circumstances to attain personal goals. Recognizing that self-determination typically leads to positive outcomes in areas such as employment, education, community living, and overall quality of life is of utmost significance (Wehmeyer and Field, 2003).
Theoretical background
The theoretical framework of self-determination is grounded in several interrelated theories, including Deci and Ryan’s Self-Determination Theory (SDT), Bandura’s Social Cognitive Theory, and Vygotsky’s Sociocultural Theory (Mynard and Shelton-Strong, 2022). The application of self-determination in the context of individuals with visual impairment focuses on enhancing those skills to promote independence, enhance quality of life, and ensure a successful transition into adulthood (Deci and Ryan, 2000). Deci and Ryan’s SDT states that self-determination is facilitated by fulfilling three basic psychological needs, namely, autonomy, competence, and relatedness. Bandura’s Social Cognitive Theory emphasizes the role of self-efficacy in self-determination. Self-efficacy, or the belief in one’s ability to succeed, is crucial for individuals with visual impairments to overcome barriers and achieve their goals (Bandura and Wessels, 1997). On the other hand, Vygotsky’s Sociocultural Theory highlights the importance of social interaction and cultural context in learning and development (Vygotsky and Cole, 1978).
Several aspects of those theories apply to individuals with visual impairment. Examples include educational strategies that incorporate various skills that serve self-determination in the curriculum (e.g., goal setting, decision making, self-advocacy, and problem-solving) (Cmar and Markoski, 2019; Wehmeyer and Field, 2007). Parents and caregivers can reinforce the skills learned at school by providing opportunities for choice-making and encouraging independence at home (Corcoran, 2019). Noteworthy, empowerment by self-advocacy leads to increased confidence and autonomy that are essential for navigating adult life (Cao et al. 2023).
Historical perspective
Towards the conclusion of the 1930s, the concept of self-determination emerged within the realm of personality psychology, as scholars and researchers endeavored to comprehend and elucidate the interplay of external and internal factors that shape human behaviors (Agran et al. 2007; Brehmer-Rinderer et al. 2013; Cmar and Markoski, 2019). Subsequently, in 1972, the normalization movement, introduced by Nirje, brought forth the concept of self-determination specifically for individuals with disabilities, to foster their ability to independently navigate and regulate their daily lives (Köbsell, 2006). As societal perspectives concerning individuals with disabilities shifted from institutional care to complete community engagement and citizenship, self-determination has evolved into self-governance and self-advocacy (Basson, 2017; Cmar and Markoski, 2019). At the beginning of the 1990s, this principle received increased attention in special education to enhance and promote psychological empowerment, self-realization, self-regulation, and autonomy for disabled persons (Mittler, 2015). During the early 1990s, the field of special education increasingly centered its efforts on promoting self-determination among individuals with disabilities. The primary goal was to boost the autonomy, self-regulation, psychological empowerment, and self-realization of children, adolescents, and adults with intellectual and developmental impairments (Shogren et al. 2006, p. 107).
In contemporary times, the term self-determination encompasses endeavors aimed at equipping individuals with disabilities with the necessary opportunities and competencies to act as active agents in their own lives, thereby enabling them to attain desirable life outcomes such as independent living, full participation, equal opportunities, and economic self-sufficiency (Cmar and Markoski, 2019). It refers to the right of disabled persons to access all the resources they need to manage and control their lives. It is essential to independence and self-reliance (Gooding, 2018, p. 41). Henceforth, according to Article IV of the Convention on the Rights of Persons with Disabilities (CRPD), member states bear the responsibility of guaranteeing the accessibility of information to individuals with disabilities regarding mobility aids and devices, assistive technologies (including emerging technologies), as well as various forms of assistance, support services, and facilities. These provisions aim to facilitate independent living and promote the complete participation of individuals with disabilities in all aspects of societal life.
While access to information is not the only essential requirement for self-determination for people who are visually impaired, it is a crucial element for promoting autonomy. The Web Content Accessibility Guidelines (WCAG) provides specific directions to guide such approach not only for people with VI but also other types of disabilities (Caldwell et al. 2008). In brief, text alternatives for any non-text content, such as large print, braille, speech, or symbols may aid in making the information more accessible for people with VI. Furthermore, creating content that is adaptable and distinguishable makes it easier for users to see and hear the content. The guidelines recommend providing methods to assist users navigate and find content, together with maximizing compatibility with current and future user agents, encompassing assistive technologies.
Psychological and ethical frameworks for self-determination
Mental health presentations in visually impaired individuals
Substantial evidence has validated the significant impact of visual impairment on an individual’s mental well-being and overall quality of life. Research studies have consistently shown an increased prevalence of psychiatric disorders, such as depression, anxiety, substance use disorders, and psychotic disorders, among individuals with visual impairment compared to the broader population. Significant life stressors often accompany visual impairment, which can contribute to feelings of diminished mood, hopelessness, reduced self-esteem, and a sense of helplessness (Court et al. 2014). It has been demonstrated that depression is associated with dysfunction of brain activities linked to the primary stress hormone cortisol (Alhaj et al. 2008; Alhaj and McAllister-Williams, 2008). Individuals with visual impairment may encounter social isolation and diminished independence, factors that can contribute to the onset of depression. A recent comprehensive review revealed a substantial elevation in the risk of depression among individuals with visual impairment (Virgili et al. 2022). Similarly, a Cochrane review reported a high prevalence of depression among visually impaired individuals, although the severity of the visual impairment did not influence the prevalence, suggesting that even mildly impaired individuals were still at risk of depression (Parravano et al. 2021). The risk of suicide has been shown to increase in elderly populations with VI, and it is thought that loss of vision is an independent risk factor for suicide among this group (Cosh et al. 2019; Waern, 2002).
Anxiety can also be experienced by individuals with VI, which may be related to worries around navigating their environment, performing activities of daily living, and social interactions. Further, individuals with VI have also reported health-related anxieties, and can be associated with worries about further vision loss. Not many research studies have explored the prevalence of anxiety among populations with VI. The current evidence suggests higher anxiety rates than the general population (Demmin and Silverstein, 2020). It has been reported that a new diagnosis of glaucoma is associated with anxiety symptoms in around a third of the study sample, although this was not linked to the degree of visual impairment (Jampel et al. 2007). It can be postulated that the worry about loss of vision and worsening condition contributed to the anxiety, even when visual acuity was not reduced.
The COVID-19 pandemic has been shown to exert a substantial toll on the health and well-being of individuals across the globe. The pandemic has particularly affected vulnerable populations, including those with visual impairment. A recent study undertaken in the United States investigated the effects of visual impairment on levels of depression and anxiety amid the COVID-19 pandemic (Sekimitsu et al. 2022). Additionally, there has been a deterioration in the clinical presentation of anxiety and depression disorders in this population during the pandemic. Furthermore, self-reported symptoms of anxiety and depression have demonstrated an increase among individuals with visual impairment throughout the COVID-19 pandemic.
It is, therefore, important to recognize that people who are blind or have low vision have unique psychological needs due to daily challenges. Individuals with VI often feel dependent on others for tasks that sighted people take for granted. They must develop the skills and confidence to be independent in their daily activities. It has been documented that individuals with VI are more likely to face workplace, education, and social challenges in different parts of the world (Bashir et al. 2024; Martiniello and Wittich, 2019). Empowerment with the necessary skills and resources will likely help them succeed in these areas. Specifically, studies have shown that emotional and social support can help reduce feelings of isolation and loneliness and improve their abilities to cope with the psychological impact of their vision loss (Chu and Chan, 2022; Nyman et al. 2012).
Ethical perspectives of the right to information
Individuals with VI may face discrimination and barriers in society due to their condition. It is important to advocate for their rights and promote social inclusion and accessibility for all. The right to information is a fundamental human right that should be accessible to all individuals. For people who are blind or have low vision, accessing accurate and up-to-date information can be a challenge, but it is considered an absolute necessity to ensure they are aware of their condition and the resources and services available to them. This information helps them make appropriate decisions about their healthcare, education, and employment. There are several ways to make information accessible for visually impaired individuals. One common method is through audio recordings in various formats such as DVD, MP3, or through online streaming services. Information can be transcribed into Braille and provided in print or electronic format, yet people with visual impairment continue to face many barriers. The additional challenge of accessing information among those with mental health conditions combined with visual impairment has been discussed (For a review, see Demmin and Silverstein, 2020). Lack of access to psychological therapies, treatment and counselling support among people with visual impairment is a striking example of the inequalities they are facing that may affect self-esteem, which itself is a feature of depressive disorders (Rees et al. 2010). It has been recommended that the information should be accessible by clear and concise language, explanations of technical terms and concepts, and examples or analogies to help with understanding.
Promoting the mental well-being of individuals with VI cannot be achieved without considering several ethical issues. Firstly, visually impaired people must be able to give informed consent for any mental health treatment they receive. This means that they need to be provided with all the necessary information about the treatment and have the ability to understand it before making a decision. Secondly, mental health care services must be accessible to blind and visually impaired people. This may include accommodations such as Braille materials, audio recordings, and sign language interpreters. Thirdly, it is important to acknowledge that individuals with visual impairment who experience mental health issues are at an elevated risk of compromising their right to privacy and confidentiality. Therefore, mental health professionals must undertake appropriate measures to safeguard the privacy and security of information pertaining to their visually impaired clients while upholding their fundamental right to privacy and confidentiality.
Cultural perspectives for self-determination
Limited research examined the mental health needs of people with visual impairment related to cultural sensitivity. However, some evidence suggests that cultural factors demonstrate a role in shaping the experiences and mental health needs of people from diverse backgrounds who are blind or have low vision. For instance, this specific group encounter distinct obstacles concerning stigma, familial support, and access to culturally sensitive mental health services. Additional research is required to advance an understanding of the mental health requirements specific to individuals with visual impairment from diverse cultural backgrounds and formulate efficacious interventions that are culturally sensitive and appropriate.
There is a scarcity of studies investigating the mental health needs of people with visual impairment within the culture of the North Africa and the Middle East (MENA) region. A study conducted in Egypt revealed that elderly individuals with visual impairment exhibit lower quality of life indicators, including mental health and social functioning (El-banna et al. 2019). Cultural factors such as stigma, lack of support from friends and family, and barriers to access to mental health services have been identified as significant barriers to seeking help for mental health issues. Another study from Iran demonstrated that individuals with VI have a significantly lower quality of life in social and leisure domains (Khorrami-Nejad et al. 2016). The stigma associated with mental illness appears to be a significant barrier to accessing mental health services in the MENA region. It is abundantly clear that more research is needed to recognize the mental health of visually impaired individuals in the Middle East and Arab culture and to develop culturally appropriate interventions to support their mental health.
It is beyond dispute that people with visual impairment must be treated with respect and dignity, and mental health care providers must not discriminate against them based on their disability. The right to make decisions about their mental health care must be ensured, and mental health care providers must respect their autonomy and allow them to make their own decisions. The ability to decide about one’s life is an essential aspect of mental health for everyone, including people with visual impairment. Self-determination is particularly important for this group, as they may face challenges related to independence and control over their lives due to their disability. A study from Greece demonstrated that visual impairment impacts on self-esteem (Papadopoulos et al. 2013). Exercising self-determination in this group is likely to improve their self-esteem, promoting the sense of control over their lives, which can help them lead fulfilling and meaningful lives.
In culturally appropriate ways, self-determination can be fostered by providing access to education and training that respects local values while promoting independence and self-sufficiency (Cmar and Markoski, 2019). Encouraging participation in social activities and support groups that align with community and family structures helps strengthen social connections and emotional well-being. Assistive technology, tailored to the needs of individuals who are blind or have low vision, enables them to access information, communicate with others, and navigate their environment more effectively (Messaoudi et al. 2022). Similarly, creating opportunities for work and employment that respect cultural norms and values may facilitate people with visual impairment to meaningfully contribute to their society and achieve financial independence.
The regulatory framework
The challenges facing individuals with VI in their pursuit of full self-determination are multifaceted and often interconnected. Addressing these challenges requires a collaborative effort from society, including improved accessibility, anti-discrimination measures, increased awareness, and the promotion of inclusive environments, empowering individuals with VI to live their lives on their terms. The right of people with VI to access information is not an end but rather a means to make the right decision to improve their quality of life. The right to access information is recognized as an umbrella principle that encompasses a set of rights that affects civil, economic, political, and social rights, especially for the marginalized groups of rightsholders (Al Aqeel et al. 2018; SA, 2011). Equal access to information is intricately connected to the right of individuals to be free from discrimination. Achieving equal access to information is a crucial step towards ensuring non-discriminatory decisions (Ayoubi, 2012). Therefore, Art. 3 CRPD enumerates ‘non-discrimination’ as a core principle, and Art. 4 focuses on non-discrimination more specifically. It stipulates that State Parties commit to guaranteeing and advancing the complete attainment of all human rights and fundamental freedoms for every individual with disabilities, devoid of any form of discrimination based on disability. Equality requires enacting favorable action to a specific group of people to eliminate or diminish conditions that help or cause to propagate (Cmar and Markoski, 2019; Kanter, 2019; Kohn, 2021). However, in cases where it is necessary to rectify discrimination, such actions can be considered legitimate differentiation under the Covenant. The right of visually impaired individuals to access information holds significant importance in ensuring the realization of the “Equalization of Opportunities” right. This right represents governments’ robust moral and political commitment to undertake proactive measures to attain equitable opportunities for individuals with disabilities. Information is pivotal in bolstering and elevating healthcare and social welfare for visually impaired individuals. A research study by Papadopoulos and Scanlon determined that this information should be furnished in “plain language” during the diagnosis phase and available in alternative formats, including large print, audiotape, and Braille (I. Papadopoulos and Scanlon, 2002).
International perspective
The International Convention on the Rights of Persons with Disabilities (CRPD) issued by the United Nations in 2008 by Federal Decree No 116 of 2009, is the first international convention that protects and represents the rights of those with disabilities. It aims to advocate for, safeguard, and ensure the complete and equitable realization of all human rights and fundamental freedoms for persons with disabilities, concurrently cultivating a culture characterized by dignity and reverence (Article 1). It recognizes the paramount importance of individual autonomy and independence, particularly concerning the freedom of decision-making. The Universal Declaration of Human Rights (UDHR) affirms all individuals’ inherent freedom and equality regarding dignity and rights. In accordance with the World Medical Association’s Declaration of Lisbon on the Rights of the Patient, patients possess the self-determination right and the ability to make autonomous decisions concerning their well-being, necessitating a clear understanding of the consequences of withholding consent (Ayoubi, 2012; Gooding, 2018; Köbsell, 2006; Arnardóttir and Quinn, 2009).
Also, the UDHR emphasizes every person’s inherent dignity and equality and recognizes that every person possesses certain inalienable rights. This right should include disabled persons (Basson, 2017; Bruce and Parker, 2012; Gooding, 2018; Officer and Shakespeare, 2013). The International Covenant on Economic, Social and Cultural Rights (ICESCR) links self-determination Principe and the concept of an adequate living, prohibiting discrimination on several grounds provided in its Art. 2/2. ICESCR has established specific guidelines for an “adequate standard of living,”; as full respect should be considered for human dignity and non-discrimination principles as provided in its preamble. Since Article 28 of the CRPD is correspondingly worded to Article 11 of the ICESCR, so both must be interpreted similarly (Brehmer-Rinderer et al. 2013; Bruce and Parker, 2012; Kanter, 2019; Köbsell, 2006; Mittler, 2015; Arnardóttir and Quinn, 2009). Also, the CRPD defines both equality and non-discrimination; it upholds equality of opportunity as a fundamental principle at its core (art. 3); therefore, it seeks the equality of opportunity, not the equality of outcomes, as the last could lead to paternalistic results (Cmar and Markoski, 2019). For these reasons, many literature reviews make clear that people with VI needs positive discrimination to reach equal outcomes with others.
Therefore, Art. 19 of the CRPD recognizes the self-determination principle; it recognizes the equal entitlement of all individuals with disabilities to reside in the community, with equal opportunities for choice, and mandates implementing effective and appropriate measures. Furthermore, it emphasizes the imperative of their full inclusion in the community. Article 9 of the convention mandates member states to employ all necessary measures to facilitate independent living. Additionally, the convention underscores non-discrimination, as outlined in Articles 3 and 4, as a guiding tenet (Ayoubi, 2012, p. 45). The member states must respect people’s right to manage their daily lives independently and ensure their integration into society (Gooding, 2018, p. 36). They are also required to remove barriers to access to ensure their right to “access their environment, transportation, public facilities, services, information, and communications on an equal basis with all others” (Agran et al. 2007; Basson, 2017; Köbsell, 2006; Mittler, 2015; Arnardóttir and Quinn, 2009; Officer and Shakespeare, 2013; Paré, 2019).
According to Article 34 of the CRPD, the Committee on the Rights of Persons with Disabilities was instituted to guide member states in interpreting the convention’s clauses and monitoring their responsibilities’ discharge. Article 35 empowers the Committee to determine guidelines pertaining to the reports submitted by member states. According to these powers, the Committee issued its “general comment No. 5 (2017) on living independently and being included in the community” (The Report). The Report supports the state parties in implementing Article 19 and carrying out their duties under the convention.
The second paragraph of the Report considered self-determination one of the critical pillars of the convention. The relationship between Art. 19 and the UDHR is noteworthy (Gooding, 2018, p. 38). The fair implementation of the principle outlined in Article 29(1) of the UDHR, which emphasizes the duties of individuals to the community for the sake of their own free and full personal development, necessitates the fulfillment of several criteria. As identified in Paragraph 16 of the Report, these criteria include self-determination, personal autonomy, unrestricted access to transportation and information, the right to independent living, community inclusion, and the availability of appropriate living arrangements and personal assistance. Furthermore, Paragraph 85 underscores the entitlement of individuals with disabilities to access and communicate information and ideas on an equitable footing with others (Arnardóttir and Quinn, 2009; Gould et al. 2015a). It emphasizes providing communication in formats selected by individuals, including Braille, sign language, tactile, and Easy Read formats, as well as alternative modes, means, and communication formats. Additionally, Paragraph 19 of the Report accentuates the importance of the right to independent living and community inclusion, which are fundamental principles articulated in Article 29 (1) of the UDHR.
First, independent living has an individual dimension; it enables disabled persons to access the resources they need to choose, control, and decide their lifestyles. This right refers to the freedom to pursue one’s emancipation without limitations on access or opportunity (Qian et al. 2022, p. 245). The realization of independent living, as outlined in Paragraph 16(a) of the Report, necessitates access to transportation, information, communication, personal assistance, suitable housing, daily routines, personal habits, gainful employment, interpersonal relationships, appropriate clothing, adequate nutrition, hygiene, healthcare, and sexual and reproductive rights. Throughout the evolution of the Disability Rights Movement, individuals with disabilities have come to recognize that to bring about meaningful and transformative change, they must take proactive action themselves. This proactive engagement is essential for attaining self-determination, which empowers individuals with disabilities to practice control over their own lives and effectively respond to their social and economic needs (Tichá et al. 2018). Some planned activities may enhance the ability of people who are blind or have low vision to practice self-determination. Parents and practitioners need to consider that youths with visual impairments have the right to participate in the same activities as their sighted peers and all efforts should be made to provide safe options for all children to enjoy the myriads of benefits of outdoor adventure activities (Lieberman et al. 2023).
Second, the right to community inclusion encompasses a social aspect, entailing the entitlement to reside in an environment promoting self-determination. To enable the complete integration and active engagement of individuals with disabilities in all aspects of societal existence, it is essential to guarantee their unimpeded entry to all services accessible to the public, alongside delivering support services meticulously designed to address the unique requirements of individuals with disabilities (Kanter, 2019, p. 323). These services encompass a wide range of facets, including but not limited to housing, transportation, shopping, education, employment, recreational activities, and all other facilities and commodities that are accessible to the public. This scope also encompasses digital platforms and social media. (Para. 16 (b) of the Report).Different educational frameworks should include self-determination as one of the inclusion determinants. For example, both the Expanded Core Curriculum (ECC) in the USA, and the UK’s Curriculum Framework integrate self-determination skills across all areas of the curriculum, emphasizing practical, real-life application. However, the UK’s framework specifically focuses on personalized learning and holistic development. Noteworthy, both systems actively engage educators and parents to boost these skills, with continuous assessment and customized strategies to foster student success (Franklin et al. 2019; Frederickson and Cline, 2015). In addition, the employability of the visually impaired is another aspect in which self-determination plays a major role. Addressing factors that limit job satisfaction should help employees with visual impairment develop stable careers that keep them economically secure (Crudden et al. 2020, 2024).
Third, personal assistance pertains to providing human support to individuals with disabilities, facilitating their ability to meet their daily needs. The fundamental pillars for achieving independent living for individuals with disabilities are the recognition of legal personhood and legal agency. Consequently, Article 19 of the Convention is intricately linked to affirming legal competence and acknowledging legal personality as outlined in Article 12 (Para. 27 of the Report). The Convention agreement acknowledges that people with disabilities are not autonomous like others and that one’s level of independence should not be a criterion for success. As a result, the convention rejects the idea that dependence is a negative value and instead recognizes a new right to support and interdependence. States Parties must provide the personal assistance required for a person to live and participate in society (Kanter, 2019, p. 327). Equality may demand state parties to take favorable actions toward a specific group of individuals to eliminate factors contributing to discrimination (Kanter, 2019). As long as this action is necessary to remedy existing discrimination to maintain the right to “Equalization of Opportunities,” which the UN established in 1993, it is acceptable to establish this distinction (resolution No. UN Doc. A/RES/48/96, December 20, 1993).
There is a legal perspective that does not support the “exaggeration” and the “legislative drift” in granting these rights absolutely in the direction of dispensing with the legal guardianship system (Kohn, 2021). This assertion erroneously implies that guardianship can be imposed solely based on an individual’s disability, thereby disregarding the crucial recognition of the dynamic interplay between individuals’ capabilities and their environment (Kanter, 2019). Also, guardians may abuse their authority by making decisions that contradict the individual’s values and reasonable preferences (Teaster et al. 2007). Guardianship is criticized as anti-therapeutic; it stifles the development of an individual’s abilities and primary psychological and physical well-being by breaking their sense of control over their needs (Frolik, 1998; Kohn, 2021). The CRPD underscores the argument for replacing guardianship with supported decision-making in multiple sections. It affirms that individuals with disabilities possess the legal capacity and mandates signatory states to implement the required measures to ensure the support to exercise their legal capacity. Article 12 of the CRPD entails the exclusion of guardianship and the promotion of supported decision-making (Agran et al. 2007; Cmar and Markoski, 2019; Kohn, 2021).
Also, both the CRPD and federal law acknowledge self-determination and independent living as fundamental principles, but they also challenge the notion that complete independence is attainable for all individuals, regardless of disability status. These frameworks reject the notion of portraying dependency; they introduce a new right to support and interdependence. They recognize that all individuals, disabled or not, require varying degrees of assistance and interconnectedness to manage their daily needs and achieve success effectively (Kanter, 2019). The interpretation of these rights should not be limited to the sole concept of complete and autonomous control over one’s daily life. Independent living encompasses a fundamental aspect of an individual’s freedom and autonomy, and it should not be equated with the notion of “living alone.” (Gooding, 2018; Köbsell, 2006; Mittler, 2015; Arnardóttir and Quinn, 2009). Independence should not be narrowly construed as solely the ability to carry out daily activities without assistance. It should be comprehended as the freedom to make choices and exercise control over one’s life, in accordance with the principles of individual autonomy and inherent dignity. However, true independence is a concept that does not exist for any individual. Every person, regardless of disability status, requires assistance at various points in their lives. It is important to recognize that some individuals, both with and without disabilities, may require more support, irrespective of their overall health status.
Considering these standards, the question arises as to what extent the legislation of the United Arab Emirates has complied with these provisions.
The UAE perspective
The United Arab Emirates ratified most international conventions on human rights in general and persons with disabilities in particular. It has ratified the CRPD by Federal Decree No 116 of 2009. Before the ratification of the CRPD, the UAE demonstrated its commitment to addressing the rights of individuals with disabilities. This commitment was evident through enacting various legislative measures, statutes, and ministerial decrees aimed at safeguarding the interests of this population. Two years before ratifying the convention, the UAE introduced Law No. 29 of 2006 Concerning the Rights of People with Special Needs (LRPSN).Footnote 1 In accordance with Article 125 of the UAE Constitution, the local governments of the UAE are obligated to undertake the necessary measures to enforce the laws derived from international treaties and agreements. In numerous jurisdictions, the CRPD has been incorporated into national legislation, thereby acquiring the status of domestic law (Fayyad and Byttebier, 2021).Footnote 2 Some texts of Law No. 29 of 2006 were replaced by Decree-Law No. 14 of 2009 to comply with the convention’s provisions. Also, several secondary legislations and ministerial decisions have been issued to ensure the convention’s implementation.
The decision-maker in the UAE replaced the term “people with disabilities” with “people of determination” to emphasize their right to self-determination. Article 3 of the LRPSN legitimized this principle to integrate this group with society and enable them to exercise all their legal rights stipulated in the Constitution. It mandates the state to take comprehensive measures aimed at eradicating discrimination against individuals with disabilities, ensuring their equal treatment in comparison to those without disabilities. Furthermore, it commits to promoting equality in all policies and programs, while enacting necessary measures to prohibit discrimination based on an individual’s unique needs. Discrimination, as defined in Article 2, encompasses any form of exclusion or restriction based on special needs that impairs or denies the recognition of rights outlined in relevant legislation, thereby hindering their equal enjoyment and exercise. The right to information for individuals with visual impairment is specifically addressed in Article 6(2) of the Law on the Rights of People of Determination, which stipulates the state’s obligation to provide necessary information when restricting their freedom. Article 7 assures their entitlement to express their opinions and communicate through methods such as Braille, sign language, and other communication modalities. It also safeguards their right to request, obtain, and convey information on the same terms as others.
The UAE has implemented necessary measures to support individuals with disabilities in society. Various regulations mandate competent authorities to uphold this right for individuals with disabilities across different sectors, including education, employment, and transportation (Articles 13, 16, 17, 19, 20). The fifth chapter of the Law on the Rights of People of Determination (LRPSN), titled “qualified environment,” contains several legal provisions to create suitable living conditions for this group to exercise their right to self-determination. In line with this, the accommodation of individuals with disabilities in care and rehabilitation centers in a manner that isolates and separates them from their family environment is prohibited (Article 9 LRPSN). Consequently, Council of Ministers Decision No. 7 of 2010 was enacted to prohibit the issuance of licenses for institutions offering boarding facilities for this group.
Also, Article 157 of the Civil Code No. 5 of 1985 recognizes the legal capacity of every person unless otherwise deprived or restricted by law. Specifically, individuals with limited legal capacity, such as those deemed feeble-minded or mentally unsound, as well as those deemed insane, are placed under guardians’ care. Furthermore, Article 173 of the Civil Code allows for appointing a judicial assistant for individuals with dual disabilities. The role of the judicial assistant is to assist this group in expressing their intentions rather than making decisions on their behalf.
Conclusions and recommendations
Self-determination is a fundamental human right, essential for individual and collective well-being, autonomy, and empowerment. Beyond its conceptual significance in various aspects of life, it plays a crucial role in fostering independence for individuals with visual impairment. Lawmakers in the UAE should prioritize facilitating access to information as a key step toward promoting self-determination, a right that must be respected and upheld whenever possible.
Depression and anxiety have been recognized as the most prevailing psychological disorders in people with VI. People with VI should properly access mental health-related information about the diagnosis and treatment to enable their decision-making process and achieving self-determination. Independent life, inclusion in the community, and personal assistance are basic rights to be ensured for subjects with VI. National measures towards “equalization of opportunities” should be undertaken and people with VI should advocate self-determination subjects themselves. The Convention recognizes the right of disabled persons to access information equally with others and the importance of promoting their autonomy and self-determination. Yet, visually impaired individuals often face obstacles such as inaccessible information, limited assistive technology, and negative societal attitudes toward their capabilities.
The UAE has made significant strides in promoting self-determination. The decision to replace the term ‘people with disabilities’ with ‘people of determination’ is highly commendable, as it highlights and reinforces their right to self-determination. To fully realize the rights and potential of individuals with visual impairments, the UAE should address existing barriers and foster inclusive, accessible environments. This can be achieved through investments in assistive technology, providing information in accessible formats, and actively involving individuals with VI in decision-making processes. It is recommended that the UAE (1) implement policy frameworks that ensure equal access to all public facilities and services, including information, for individuals with disabilities across the entire state; and (2) develop a comprehensive strategy to enhance the rights of disabled persons, with a focus on promoting independent living and active societal participation. This strategy should include educational initiatives for disabled individuals and their families, providing guidance on accessing support that enables independent living in line with personal preferences and as valued members of society. These recommendations could also be shared with other states that have ratified the CRPD, serving as practical tools for implementing the convention’s provisions on relevant rights.
Notes
Federal Law No. 29 of 2006 on the rights of people with special needs, published in the official inventory No. 453 of the 36th year on 28-6-2006.
See for example: Abu Dhabi Cassation Court decision No. (259/2012), the Federal Supreme Court, Civil and Commercial Rulings, Appeal No. 121 of Judicial Year 16, dated January 21, 2008.
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Alhaj, H.A., Fayyad, M. & Saber-Ayad, M. The legal, ethical, and psychological aspects of self-determination and right to information access for people with visual impairment: a critical review. Humanit Soc Sci Commun 11, 1274 (2024). https://doi.org/10.1057/s41599-024-03798-5
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DOI: https://doi.org/10.1057/s41599-024-03798-5


