On behalf of The School of Disability Studies at Ryerson University
The School of Disability Studies at Ryerson University, led by strong disability and Mad-identified scholars, is dedicated to offering curriculum, public lectures, and artistic and activist forms that rethink disability. We teach our students, who range from policy makers, to educational assistants, to school board trustees, to personal support workers, to group home coordinators, to disability activists that the cultural impulse to understand disability as a problem in need of solution, with both the problem and the responsibility to find a solution, located strictly in the individual, does more than simply demonstrate a poverty of imagination which flattens human experiences; such understanding of disability has dangerous and deadly effects on our lives. We teach our students that when our lives are represented as lives not worth living within the Canadian social and political landscape, this severely limits disabled people’s chances for ‘fully participating in social and civic life,’ as promised under the Canadian Charter of Rights and Freedom. Representations that our life is not worth living can limit our possibilities for having a life at all or dying when we choose to die.
We also teach our students that when disability is represented differently, as a life worth living, as a prideful identity bringing us into a vibrant disability community, as it is through disability studies, arts, and activism, this expands our possibilities for living the kind of life, and the length of life, that we want to live. More broadly, it offers vital and hopeful paths to those whose bodies and minds are altered through injury, illness or age and who may the most vulnerable to the fears and misconceptions surrounding ones newly impaired self.
All of the activities carried out at the School of Disability Studies are informed by a blending of disability studies and its theoretical approaches and the experiences our everyday lives of disabled and Mad people aimed at advancing the rights and justices for our communities. Our submission below engenders this commitment.
Our School held a panel on the Carter vs. Canada case last summer as part of our annual disability studies summer institute, after which our students were asked to generate a list of things to consider in the crafting of this legislation. In closing, we offer a few of their recommendations:
- There needs to be careful consideration of how ‘consent’ is constructed under this legislation. Often people labeled with cognitive impairments and psychiatric diagnoses are not considered to have the capacity to give informed consent. The request for physician-assisted suicide must not come from a substitute decision-maker. It must come from the person themselves;
- There needs to be careful consideration of how ‘death with dignity’ is constructed. Life and death with disability should be represented as dignified by physicians;
- The decision for physician-assisted suicide must not be made solely between the patient and their doctor. Authorizations must be put to an external review panel;
- In order for physician-assisted suicide to truly be a choice, Canadians need greater access to palliative care and a discussion of death as a process, rather than a technologically mediated intervention;
- Safeguards should be established to prevent the marketization of physician-assisted dying and the risk of inter-provincial ‘death tourism’ as currently exists in the global context;
- Legislation should, as much as possible, prevent doctors from making this recommendation because of a ‘cost-benefit analysis’ of how expensive it is to keep people in long-tern care. This legislation must ensure that physicians do not benefit financially from performing physician-assisted suicide;
- The difference between ‘struggling’ because of socio-political factors and ‘suffering’ must be carefully considered. Physician-assisted suicide should not be made an option for those who are struggling because of limited access to services;
- Take seriously the disability rights’ slogan nothing about us with us, and ensure that established disability activists, whose activism is informed by their life and work experiences, are integrally involved in the crafting and review of all legislation emerging from the Carter vs Canada decision;
- Along with this legislation, which will potentially limit the lives of disabled Canadians, the government must invest in other legislation that will expand and improve disabled people’s lives, namely a federal accessibility legislation such as the one proposed by Barrier-Free Canada: http://barrierfreecanada.org/home/. Such a legislation will go a long way in representing disability a life that is desirable within social, cultural, and political life. We are sure that having an accessible society that allows disabled people to be visible in our midst will demonstrate the disabled life as one that is worth living.
The School of Disability Studies