What was missing from this new understanding though, were the voices of people with intellectual disabilities. Certainly, as disabled people, those with intellectual disabilities have a good deal in common with those who have physical disabilities, but I could not believe that their experiences were equivalent. I set out to do this research with that as my goal; to find out what their experiences were and how they felt about their lives as intellectually disabled people.
This is the abstract from my thesis:
There is a growing perception in the disability rights movement that traditional ways of thinking about and describing disability serve to oppress people with disabilities. The emerging social theory of disability attempts to describe the social constructedness of disability and views disability from a rights perspective. Informed by this theory and in an effort to give voice to people with intellectual disabilities, a qualitative study asking intellectually disabled self advocates to describe their experiences of life with an intellectual disability was conducted. Based on the findings of preliminary focus group research, individual interviews were conducted with four members of that group. The interviews were recorded, transcribed and analyzed following a narrative technique. Participants discussed their experiences and identified issues of importance. These issues included dissatisfaction with income support services, concerns regarding violence and abuse, inadequate social work support and a general lack of respect. The results of this study have implications for policy development, service provision and social work practice in general.
What it really means is that I interviewed people who have intellectual disabilities and asked them, basically, what their issues were. They had no problem telling me, and I heard stories of abuse and neglect and harrassment and just a general lack of respect for them as human beings with the same hopes and desires as non-disabled people. They also said that many of their difficulties have nothing to do with their disabilities, but with other people's attitudes towards them.
The message that came through loud and clear was that people with intellectual disabilities are tired of it and they are organizing. Through groups like People First and other self-advocacy organizations, they are making it clear that things need to change. And soon.