As the anthem suggests , Trinidad and Tobago, or, as it is fondly referred to by locals, âTTâ, holds a reputation in the Caribbean as a place of tolerance, multiculturalism, and equitable social relationships. The history of mixed colonial influences has produced a unique combination of cultures from all corners of the globe, and day-to-day life is marked by a tremendous creativity and love of life expressed in its peopleâs quick humor and easy-going ways.
Trinidad was colonized by Spain throughout the sixteenth and seventeenth centuries, and then by Britain from 1802 until the nationâs independence in 1962. Tobago, having been settled by an even greater variety of colonists, including the Dutch and the French, was merged with Trinidad as one British territory in 1888. During those colonial periods, French settlers and, subsequently, British landowners developed and maintained economic and social power, buttressed by a âwhiteâ or âFrench Creoleâ racial/ethnic identity that asserted dominance over the population of African slaves and, subsequently, a large migration of Indian indentured laborers. To this mixture was added immigrants from China, Syria, and Lebanon, groups who, though smaller in number, gained considerable economic success. Out of this complex colonial history grew a culture which, despite centuries of interracial and ethnic inequalities, entered the period of political independence as a nation determined to adopt a stance of mutual acceptance embracing all races, cultures, and religions.
The vision of equality has been, to a large extent, enabled by oil and gas resources that have contributed to the attainment of the strongest economy in the Caribbean. With a population of approximately 1.5 million, an official unemployment rate of approximately 4%, and a 99% rate of literacy, Trinidad and Tobago was described by the US Department of State (2014) as âa high income developed country with a GDP per capita of over US $20,000 and an annual GDP of $24 billionâ (US Department of State, 2014, p. 1).
A couple of key caveats counter this promising socio-economic profile. First, the poverty rate is estimated at 20% of the population (Borgen Project, 2017; Central Intelligence Agency, 2018), indicating a severe imbalance in the distribution of the nationâs wealth. Moreover, the fragility of an over-reliance on energy resources was evidenced in a sharp economic downturn in 2016, in response to changes in the global market for oil.
In Trinidad and Tobago, children with disabilities do not have an entitled place in the public education system. The nationâs relative wealth and its high value on education has ensured schooling for all children at public cost, with one exceptionâthose with significant disabilities. As expressed by participants in this study, persons with disabilities have traditionally been isolated by stigma and superstition, yet cherished by those closest to them. In recent decades, the government provided increasing support for private schooling of children whom the public schools are not equipped to serve, but there is still no legal mandate for educational provision for these citizens.
Constructing Disability and Inclusion in the Global Context
The portrait presented in this case study will best be understood against the background of two central conversations related to disabilities: first, the discourse in the field of disability studies regarding issues of identity, self-determination, and the concept of disability itself and, second, the robust global debate regarding the concept of inclusive education for persons with disabilities. An overarching question dominates these lines of discourse: how do culture, context, and identity relate to perceptions of disability and to the meaning of inclusion?
Disability as a Social Construction
First, how is disability to be defined and valued? It is important to note that this study focuses on children with biological or developmental disabling conditions, which, from birth or early childhood, impact the childâs ability to participate in typical physical, social, and cognitive interaction. Although I will also refer to the limitations of education policies regarding children with school-based learning difficulties, such as learning disabilities, those are not the children served by the Immortelle Childrenâs Centre.
Defining disability. The United Nations Flagship report on Disability and Development (2018) refers to disability as âan evolving conceptâ (p. 44). This evolution, though uneven across societies, has been marked by a movement away from a history of rejection and superstition toward the concept of equity and individual rights, and currently highlights self-advocates who emphasize their right to determine their own paths. Articulated most prominently by two groups, those who are deaf and those who have physical impairments, the mantraâânothing about us without usââpresents a powerful challenge to the assumption that difference is synonymous with deficiency. Addressing this challenge, social theorists, Michael Oliver and Colin Barnes (1998) argued that disability should not be seen solely as an individual characteristic based in biology, but as societyâs failure to respond positively to human differences. This âsocial modelâ of disability sees developmental differences and evident impairments as an integral part of the human landscape rather than as blemishes that detract from its beauty. The âdisabilityâ, then, lies in societyâs failure to value and accommodate these differences.
As cited in the United Nations Flagship Report (2018), this debate around individual versus social interpretations seems to have been resolved by the United Nationsâ (UN) Convention on the Rights of Persons with Disabilities (CRPD). The report acknowledges both intrinsic and social dimensions of disability, defining it as, âthe interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with othersâ (p. 44). This combination of both views successfully resolves the apparent dichotomy, identifying âimpairmentsâ and âbarriersâ as an interactive dynamic. This conceptualization also supports a long-held distinction between âimpairmentâ as a term indicating a biological anomaly and a âdisabilityâ, which results from a social environment that does not respect or accommodate the needs of the individual with the impairment. For example, the sociologist Erving Goffman (1963) demonstrated how the identity of individuals with disabilities can be âspoiledâ, by social stigma as well as by the debilitating realities that mark their daily struggle for existence. Efforts to counter such stigmatization have included the adoption of language meant to highlight strengths rather than limitations, for example, stating the person firstâa person with a disability rather than a disabled person, or using terms like âdifferently abledâ or dis/abled.
Several self-advocates, however, such as Tanya Titchkosky (2008), have argued that âpeople firstâ language actually oversimplifies the experience of disability by denying the complexity involved in embracing the wholeness of oneâs identity, including impairments and strengths. Nancy Mairs (2011) and Simi Linton (2006) go further, arguing that recognizing the validity of oneâs personhood requires authentic and explicit naming of the disability, rather than using euphemisms that avoid stating the facts of their conditions. Thus, these self-advocates refer to themselves as âcripples or cripsâ, choosing to accentuate rather than disguise their physical disabilities. The essence of this argument is that euphemistic descriptions, by avoiding stating the realities, in effect convey a message that the condition is unacceptable.
In comparing the definitions of disability used in the Caribbean nations of Jamaica and Trinidad/Tobago, Annicia Gayle-Geddes (2016) stated that although Trinidad and Tobagoâs National Policy on Persons with Disabilities (2005) does acknowledge both the biological and the social aspects of disability, both countries âprimarily position disability within a traditional medical-oriented modelâ (p. 130), as seen in the absence of legislation guaranteeing the right to access education and employment. Yet, as many parent narratives in this study will show, the medical response to congenital disabilities in Trinidad/Tobago has continued to be inadequate and inconsistent.
My own view of these contested âmodels of disabilityâ embraces both. As someone who has experienced parenting not one, but two children with disabling conditions, I am deeply aware of the medical/biological components of most conditions referred to as âdisabilitiesâ. Neither of my children asked for these identities, nor, to my knowledge, were their conditions created by society. One was born with brain damage that severely restricted her functioning and, ultimately, led to her death. The other enjoyed above-average development until his late teens, when mental illness dealt a harsh blow to his identity. For my daughter, medical care and highly skilled professional therapy was more important to her development than social constraints. For my son, medical science has been the key to moderating his brain chemistry to allow him to be the best he can be. For both, I also saw how societal barriers and lack of responsiveness contributed to negative constructions of their identities, and I continue to challenge the disabling impact of social stigma and limited social services.
In this book, I accept the definition used by the CRPD and will use the terms âimpairmentsâ and âdisabling conditionsâ when referring to the children in the study, since all of the conditions experienced by these children are based in biology. While their lived experiences are no doubt in part constructed by social contexts and practices, their physical or cognitive impairments are not.
Valuing disability. Regardless of definitions, I believe that the question of how such conditions are valued reflects societal concepts of âpersonhoodâ in the face of the disturbing question: are all human lives equally valuable? If so, in whose eyes? Embracing the lens of the social model, some disability studies scholars have challenged the assumption that mental and physical normative development should necessarily be seen as preferable to developmental anomalies. Nirmala Erevelles (2011), for example, posing the question of whether it is possible to envision a world that âwelcomes and desires disabilityâ (p. 27), concluded that such a possibility would require an âengagement with the social conditions that constitute disabilityâ (p. 27). In other words, a positive rather than negative view of disability would depend on the social world in which the person with the disability engages.
Does this mean that, with appropriate supports, the presence of a disability in a newborn or young child should be seen as simply a point along the spectrum of human variation, rather than an anomaly to be mourned, exalted, or rejected? If disability is to be seen as normative, would we then expect the appearance of a congenital impairment to be as welcome as is a healthy body? If so, then should we also expect the occurrence of impairment or illness in a previously healthy body to be just as welcome as continued good health? Memoirs by Simi Linton (2006) and Nancy Mairs (1996), who, respectively, became physically disabled through a car accident and multiple sclerosis, do not present such counter-intuitive arguments; rather, their memoirs poignantly demonstrate the role of both social environments and intrapersonal adjustments in a slow process of expanding their identities to include the painful dimensions created by disability.
Another crucial point in the discourse around valuing and advocating for individuals with disabilities is that the question of self-determination depends to a great extent on the nature of the limitations created by biological impairments. Persons with intellectual or complex multiple impairments will continue to need others to speak for them and act on their behalf, and may depend totally on others for their care. The creation of an equal place for them will be determined by the adults who advocate for them. Eva Kittay (2011), a feminist scholar whose daughter has multiple disabilities, addressed this challenge in a thoughtful discussion of what she refers to as âan ethic of careâ, which I will describe in more detail in my reporting of the parentsâ narratives later in the book.
This concern hits close to home for the children and families in this study, as most of the children and adults served by the Immortelle Childrenâs Centre rely extensively on others for their daily functioning and safety as well as for opportunities for personal development and adva...