Introduction
Background of the project
DRPI-Canada is a collaborative project funded by Social Science and Humanities Research Council (SSHRC), working to establish a sustainable monitoring system to address disability discrimination in Canada. The project employs a human rights approach to disability, which focuses attention on the way that systemic discrimination and social exclusion increase vulnerability to abuse, poverty, unemployment, other forms of discrimination and inequitable social conditions. Evidence-based knowledge regarding the extent to which people with disabilities face discrimination will inform effective societal, policy and program change to improve the lives of people with disabilities in Canada.
The project adopts a holistic framework in order to develop a sustainable system to monitor the human rights violations of people with disabilities in Canada by integrating four focus areas: individual experiences monitoring (gathering information about the actual human rights situations of people with disabilities in the communities where they live); media monitoring (examining the depiction of disability issues and persons with disabilities in the media); systemic monitoring (examining the effectiveness of laws, policies, and programs in protecting disability rights); and monitoring survey datasets (examining the information collected by Canadian population surveys on the situation of people with disabilities from a human rights perspective). DRPI-Canada is also grounded in the general human rights principles: dignity, autonomy, non-discrimination, inclusion, respect for difference, and equality.
This report is based on the work done within the Individual experiences monitoring area of the project. Related monitoring activities took place at four monitoring sites, chosen to reflect the social and cultural diversity of the nation: Quebec City, St. John’s Newfoundland, Toronto and Vancouver. This report presents data from the St. John’s monitoring site.
Partners and people involved
At St. John’s monitoring site, DRPI-Canada partnered with the Independent Living Resource Centre (ILRC) which took leadership on all stages of the monitoring activities. The ILRC is a consumer controlled organization committed to providing supports, resources and opportunities for empowerment, which enable persons with disabilities to make informed choices about their lives.
The ILRC took leadership in coordinating all monitoring activities (e.g. recruitment of monitors and interviewees; the process of data collection). The monitoring site was coordinated by the site coordinator Susan Ralph. Ten persons with disabilities - Mary Anthony, Brian Conway, Deborah Gilbert, Stephanie McGrath, Paul Morgan, Mary-Jo Power, Mike Ryan, Lynn Seward, Kim Underhay, and Sandra Yetman - were trained as monitors at a training workshop that took place in St. John’s in August, 2009.
During the training, monitors gained valuable skills on how to conduct monitoring interviews in the field (e.g. specific interview techniques; how to use the DRPI interview guide; how to obtain free and informed consent of the interviewees; how to protect data confidentiality). They were also given opportunities to practice interviewing skills with one another and with people with disabilities from local community.
Methodological approach for fieldwork
Monitoring data has been collected through face-to-face interviews with people with various types of disabilities on their lived experiences of human rights violations. 48 interviews were conducted by monitors, people with disabilities themselves after receiving ethics approval from York University. Informed consent was obtained from participants who were recruited by the ILRC in St. John’s. A mixed research methodology was used for the study. Initially, the "snowball" sampling technique was employed, a strategy recognized for its ability to recruit difficult to access groups (Lopes et al., 1996). At the end of each interview, participants were asked to refer other people who would fit the sampling criteria. The people referred were then contacted, and an interview was arranged. This strategy was reiterated several times, until the desired sample size was achieved. In order to get to isolated people, usually not connected through personal networks, the snowball technique was complemented by recruitment through the networks of our partner. The sample size was considered appropriate given the nature of this study which is mainly directed at an in-depth understanding of the meaning, context, and processes involved in the human rights experiences of people with disabilities. In light of this perspective, a qualitative approach employing intensive interviews on relatively small samples was favoured over a quantitative approach using large representative samples.
Each interview lasted on average two hours and was conducted using an interview guide previously developed by the larger international DRPI project and adapted to the Canadian context. The semi-structured interview initiated with two broad questions: Which things have you found more satisfying in your life over the last five years? And which things have presented the greatest obstacles or barriers?. Typically, interviewees named two or three key situations that monitors followed up to engage a conversation, probing into the lived experiences of the interviewees in order to explore their linkages with general human rights principles. Once collected, the interviews were transcribed, coded using a coding scheme developed by the international DRPI and then analysed using NVivo 9 software. The coding process was supervised by two experienced researchers who ensured inter-reliability and consistency of coding by comparing and contrasting codes throughout the coding process.
Strengths and Limitations of the Project
A core dimension of the individual experiences monitoring process advanced by this project is the direct involvement of people with disabilities as monitors and that of local disability organizations in all stages of monitoring. The fact that people with disabilities are the monitors in charge of interviewing other persons with disabilities is a clear advantage in that it creates an environment of mutual trust and respect between the interviewer and the interviewee that facilitates information sharing within a rigorous methodological framework. Furthermore, the leadership role played by the local partner in coordinating monitoring activities represents a key step to ensure capacity building within disability community on disability rights monitoring.
Regarding the process of data collection, the semi-structured approach employed by this project has the benefit of enabling the interviewees to focus on those topics of the most importance to them rather than imposing a battery of questions. This way, it leads to a better understanding of the actual meaning of human rights as connected to the lived experiences of people interviewed.
Besides the strength of this project, it is also important to acknowledge its limitations. The snowball technique employed by the project as its main sampling strategy has the benefit that usually is able to overcome the problem of recruitment of people with similar profiles leading to overrepresentation of this group in the sample. In this case, this did not happen. Because that did not happen in this case, the sample had to be corrected by complementing it with supplementary efforts by the local partner to include in the sample certain underrepresented subgroups of people. Another limitation is related to the training guide. Given that the guide was conceived with the primary scope of identifying the situations of denial of rights, the participants focus less on the identification of those situations when their rights were respected. In light of this limitation, comparative analysis between situations of positive and negative experiences should be interpreted with caution.