Introduction
Background of the project
DRPI-Canada is a collaborative project funded by the 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 grounded in the general human rights principles: dignity, autonomy, non-discrimination, inclusion, respect for difference, and equality.
This report is based on the work carried out within the Individual experiences monitoring area of the overall project. Related monitoring activities took place at four monitoring sites, chosen to reflect the social and cultural diversity of the nation: Quebec City, Quebec, St. John’s, Newfoundland, Toronto, Ontario and Vancouver, British Columbia. This report presents data from the Toronto monitoring site.
Partners and people involved
In addition to the people recognized in the acknowledgment section previously, there were several other organizations and people who were involved in important ways with this process. David Meyers who, at the time wore two hats – one for Birchmount Bluffs and one for the Ethno-racial Coalition of People with Disabilities was instrumental in identifying individuals for this project, as were Tracy Odell as a member of Citizens with Disabilities Ontario, John Rae from the Alliance for the Equality Blind Canadians and various others.
Methodological approach for the fieldwork
Monitoring data was collected through face-to-face interviews with people with various types of disabilities about their lived experiences of human rights. After receiving ethics approval from York University, 43 interviews were conducted by monitors who are people with disabilities themselves. Informed consent was obtained from participants who were recruited by the Centre for Independent Living, Toronto using a mixed approach. A "snowball" sampling technique was employed, a strategy recognized for its ability to recruit groups who are difficult to access (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 people who were more isolated, 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 other methodologies.
Each interview lasted on average of 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 started with two broad questions, Which things have you found more satisfying in your life over the last five years? And which things in your life have presented the greatest obstacles or barriers?
. Typically, interviewees named two or three key situations that monitors used to engage a conversation, probing into the lived experiences of those interviewed in order to explore their linkages with the exercise of human rights. Once collected, the interviews were transcribed, coded, using a coding scheme developed and field-tested in the international DRPI project, and then analysed using NVivo 8 qualitative software. Two experienced researchers who ensured inter-rater reliability and consistency of coding by comparing and contrasting codes throughout the coding process supervised 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 as well as the engagement of local disability organizations in all stages of monitoring. Having people with disabilities carry out the interviews is a solid research methodology as 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 and sustainability within the disability community in disability rights monitoring.
The semi-structured approach employed by this project in the data collection has the benefit of enabling the interviewees to focus on those topics that are most important to them rather than imposing a battery of questions. It leads to a more in depth understanding of the meaning of human rights as experienced by the interviewees.
Besides the strength of this project, it is also important to acknowledge its limitations. The sampling technique employed by the project led to the overrepresentation people with mobility impairments in the sample. To address this occurrence, the local partner added to the sample other subgroups of people who were recognized as underrepresented during the process of the study. Correcting throughout the sample is a standard and expected technique in snowball sampling.