This report, relating to the individual experiences of disabled youth, outlines one half of the activities undertaken by The Convention Coalition in 2013, regarding The Disability Convention.
Article 7 of The Disability Convention notes that “States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.” This is reflected in the Independent Monitoring Mechanism of the Disability Convention: Strategic Planning Outcomes 2013-2016 - Priority Five: Children’s Disability Rights.
This project was to have focused on children. However advice received from Disability Rights Promotion International, at York University, Toronto, Canada, suggested that ethics approval to interview children under the age of sixteen years is problematic, the main issue being the right of a parent or parents to be present when their child is interviewed. In order to gain reliable qualitative data, it is crucial that interviewers access subjects without family or teachers present. The Convention Coalition therefore decided to restrict the project to youth, aged sixteen to twenty-five years.
It proved extremely difficult to gain interview subjects for the project. This is attributed to the following factors:
- Instances of disability increase with age.
- The youth in the age range being interviewed did not necessarily identify as disabled. Teenagers are particularly reluctant to identify as being ‘different’ to their peers.
- The project team found it very difficult to access youth still at school. This appears to be due to some ‘gate-keeping’ on the part of teachers and parents, i.e. not passing on the project information to the disabled youth.
- Although asked for input at a very early phase of the project, many disability service providers did not respond to our approaches for youth to interview, or having initially responded did not follow this through.
- Many others who initially agreed to assist by locating disabled youth simply did not do so, despite several follow-ups.
As a general principle every effort was made to ensure full participation by, and representation of, a cross-section of disabled youth, throughout the various stages of the project. Gender, cultural and geographical representation was also considered of crucial importance. All interviews were, however, voluntary, and this meant we could not always meet our initial criteria. In the final analysis the diversity of impairment types was not as great as the team would have liked. The paucity of interview subjects meant everyone who agreed to be interviewed was included, regardless of impairment(s).
Some issues reported to the project team involved abuse of human rights. Some of these mirror recent media reports relating to instances of abuse of youth in residential care. One recent example is that related at http://www.stuff.co.nz/national/health/9383098/Disabled-teen-shut-in-toilet-by-carer While we have endeavored to report the gravity of the various situations the youth interviewed for this project found themselves in, we have left out some details and mixed others up, in order to preserve the anonymity and safety of those who took part in the project.
Many of the difficulties reported by the young people who participated in the project were in the nature of general disability access issues and are therefore not explored in any depth here.