The declaration of the International Year of Disabled Persons in 1981 and the international activism of persons with disabilities resulted in the globalization of disability, which involved a new framework for the treatment of PWDs. Although disability activism was being played out globally, it has been about PWDs gaining equality and full participation in their local societies. Therefore, at the heart of an international movement was the strategic organization of PWDs, most of who live in the developing world. This dissertation is based on a case study of activism for disability rights in one particular developing society, Jamaica. The Jamaican movement is spearheaded by the Combined Disabilities Association (CDA), which has been at the forefront of disability rights activism locally and regionally. The primary research question: how does CDA organize strategically to meet the needs of the broader disabled population of Jamaica is broken down into the following four sub-questions: 1) how is "disability" constructed in the context of Jamaican culture, 2) how did CDA members negotiate their original involvement and level of participation with the organization, 3) what is the nature of the linkage between the CDA and Disabled People International, and how does this relationship affect CDA's policies and procedures, and 4) what strategies does CDA employ to mobilize PWDs in Jamaica to participate in advocacy activities? These questions are explored using participant observation, semi-structured interviews, survey, and document review. Findings reveal a complex construction of disability as Jamaicans negotiate between various beliefs and ideas to understand the meaning of disability. Furthermore, the negotiation of movement involvement by PWDs is based their connections have with fellow members as well as the personal benefits that they receive. Although the CDA has been influenced by the international disability movement, it has also contributed to the global activism, especially in the Caribbean. In a local environment overwhelmed by limited financial resources and social inequalities the CDA by default addresses some social welfare of PWDS, while pursuing its primary commitment to advocacy, resulting in numerous challenges.

Le test génomique prénatal non invasif (TGPNI) est un test présentement offert au Canada, dans le cadre de programmes provinciaux de dépistage prénatal des aneuploïdies, comme test de seconde intention. Il est également disponible au privé comme test de 1ère intention et/ou pour un nombre étendu de conditions génétiques. Ce projet visait à d’identifier les enjeux soulevés par l’offre du TGPNI en 1ère intention et du TGPNI pour un nombre étendu de conditions, selon des associations canadiennes représentant des gens avec des conditions génétiques ciblées par le TGPNI. Des entrevues semi-structurées ont été réalisées avec des représentants de douze associations régionales, provinciales et nationales. Les entrevues furent transcrites puis analysées par analyse thématique. Les associations ont relevé tant des éléments positifs que négatifs. D’un côté, elles perçoivent comme problématique l’accès privé au TGPNI en 1ère intention ou étendu, puisqu’il entraîne une inégalité d’accès à l’information sur le foetus. Par contre, les associations craignent que l’offre du TGPNI, mais surtout une possible routinisation de l’offre tu test, puisse avoir un impact sur la vision sociétale des conditions ciblées. Elles soulignent qu’il est important de considérer les impacts potentiels du TGPNI, dont le risque de discrimination. Les associations sont critiques de l’information véhiculée lors de la discussion des tests et pensent pouvoir jouer un rôle pour améliorer l’information donnée aux personnes enceintes. Ces résultats réitérent l’importance de prendre en considération les perspectives des différentes parties prenantes lors de la prise de décisions de politiques de santé. / Non-invasive prenatal genomic testing (NIPT) is a test that is currently available in Canada as a second-tier test in provincial prenatal aneuploidy screening programs. It is also available privately as a first-tier test and/or offered for a wide range of genetic conditions. The purpose of this project was to identify the issues raised by the availability of NIPT as a first-tier test and NIPT for a wide range of conditions, according to Canadian associations representing people with genetic conditions targeted by NIPT. Semi-structured interviews were conducted with representatives from twelve regional, provincial and national associations. The interviews were transcribed and analyzed by thematic analysis. The associations identified both positive and negative elements. They perceived private first-tier and expanded access to NIPT as problematic, as it results in unequal access to fetal information. On the other hand, the associations were concerned about a possible routinization of NIPT and about the message sent by the offer of NIPT regarding the societal perception of the targeted conditions. They stressed the importance of considering the potential impacts of NIPT, including the risk of discrimination. The associations are uncertain regarding what type of information ought to be communicated during the discussion of the tests and believe they can play a role in improving the information provided to pregnant people. These results highlight the importance of considering the perspectives of different stakeholders when making health policy decisions.