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 on the way that systemic discrimination and social exclusion increase vulnerability to abuse, poverty, unemployment, and 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'sNewfoundland, Toronto and Vancouver. This report presents data from Vancouver monitoring site.
Partners and people involved
At Vancouver monitoring site, DRPI-Canada partnered with the BC Coalition of People with Disabilities (BCCPD) which took leadership on all stages of the monitoring activities. The BCCPD has been a provincial, cross-disability voice in British Columbia for over 30 years. Its mission is to raise awareness around issues that affect the lives of people with disabilities and facilitate their active participation in community.
The BCCPD 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 Sam Bradd. Eight persons with disabilities - Jennifer Anthony, Linda Bartram, Debbie Brkich, Lorraine Irlam, Chloe Krause, Tom McGregor, David Schaefer and Jewelles Smith - were trained as monitors by means of a training workshop that took place in Vancouver in May, 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 field work
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. 41 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 BCCPD using a mixed approach. 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 the human rights principles. Once collected, the interviews were transcribed, coded using a coding scheme developed by the international DRPI and then analysed using NVivo 8 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 as partners 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 enabled the interviewees to focus on those topics most important to them rather than imposing a battery of questions. This way, it provides a better understanding of the actual meaning of human rights in the lives of the participants.
It is also important to acknowledge project limitations. The snowball technique employed by the project as its main sampling strategy is conducive to the recruitment of people with similar profiles leading to overrepresentation of some characteristics in the sample. In order to overcome this limitation, the snowball technique was complemented with supplementary efforts by the local partner to include in the sample certain underrepresented subgroups of people. Another limitation is related to the small non-probabilistic sample employed by the project which doesn't allow for generalizations beyond the population interviewed. However, given the nature of this project 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, a qualitative approach with a small sample was considered more appropriate than a large-scale quantitative study.