Interview with Michael Bach, new MDAC Board Member

 

I am Executive Vice-President of the Canadian Association for Community Living (CACL), an association of over 40,000 members in Canada and organised as federation of 400 local and 13 provincial/territorial Associations for Community Living. Our mandate is to advance the full inclusion and human rights of people with intellectual disabilities in Canada, and through our regional and international federations, Inclusion Inter-Americana and Inclusion International, to make a global impact on inclusion. I don’t know when I first became interested in issues of inclusion and human rights – I was probably drawn to these issues through the values and culture of my family as my parents were very involved in social development as volunteers and professionals. My first direct involvement was as a teenager, when I volunteered with a community organisation to support people with intellectual and other disabilities, rather ridiculously named, the ‘Pink Pelican’ club (it was the 1970s – what can I say). I later pursued my interests in social policy through my undergraduate and post-graduate education and while working (for many years) on my PhD in sociology and equity studies with a focus on disability, I had the good fortune of working for the Roeher Institute, a national research institute in Canada on human rights and intellectual disability.

 

I have followed MDAC’s work over these past years and have been particularly impressed with the depth and breadth of the accomplishments in strategic litigation, policy research and support of law reform efforts. The leadership and team is highly skilled and deeply respected internationally. The organisation has come to stand as a courageous and outspoken human rights advocate for people with intellectual and psycho-social disabilities, bringing sophisticated and in-depth analysis, and a multi-faceted litigation strategy. Its successes in litigation and the body of work being developed through MDAC’s efforts are so worth supporting. The particular focus on advancing human rights of people with intellectual disabilities is obviously very close to my heart.

 

I also very much appreciate MDAC’s unique position as an organisation mandated to take strategic litigation and to provide tools and resources for the broader disability community to advance law reform agendas. Although MDAC is not a membership organisation, it is seen increasingly as an ally for the disability rights movement. This position poses distinct challenges. How best to listen to and engage with the disability rights movement in all its diversity and sometimes contradiction in order to draw upon its leadership and insight, without being directly accountable and bound by the terms of the movement and its organisations? I believe that MDAC should be an intellectual leader, engaging and advising the disability rights movement, without being organisationally accountable to its politics. My sense is that the leadership of MDAC has done a very admirable job in maneuvering in this unique but essential role. As someone who worked within a research institute attached to a disability rights advocacy association, I understand both the challenges and the value of the kind of positioning MDAC is carving out.

 

To support MDAC, I can bring over 20 years of experience in disability rights policy research, law reform advocacy, strategic litigation and strategic organisational development. I began my work in disability as a policy researcher with the Roeher Institute where I had the opportunity to undertake program evaluations and policy research in a wide array of disability-related issues - individualised funding, employment, literacy, disability supports, legal capacity and supported decision making, family supports, etc. Most of my research has been in the Canadian context but I have also had opportunity to work on research initiatives in Latin America, Europe and India.

 

 

Given the comprehensive reform agenda the CRPD imagines, I think our biggest challenge will be to choose priorities. How do we do this? My own view is that we should start with those who have most to gain through this Convention, because the struggle and resistance to change will be most intense in these areas. This will help to always keep in perspective what remains to be done. By ‘most to gain’ I do not want to diminish the impact the Convention should, and must have, for all people with disabilities. It’s just that it commands a paradigm shift with respect to certain groups; most so I think for people with intellectual and psycho-social disabilities, in particular people with significant disabilities.

 

These are groups who will continue to be seen by most as unable to meet the standards in the Convention needed to maximise their learning potential in a regular classroom because their needs and forms of communication are so unique. There is a very real risk that adults in these groups will be seen as unable to make choices under Article 19 about where to live, and so institutional confinement will be justified. There is a very real risk that those who are seen as unable to give informed consent will have others decide they need chemical restraints in the form of medication, or aversive conditioning, or continued confinement as treatment because it is in their long-term best interests. There is a very real risk that their legal capacity to make their own decisions will be removed, not because they have a significant disability, as that would be discrimination under the Convention, but because they are unable to meet the tests of mental/intellectual capacity that are the basis on which non-disabled ‘others’ maintain and exercise their legal capacity, or have it restricted.

 

 

As I understand it, MDAC’s raison d'être is to intervene in these constructions. Its role is to challenge them, to expose the unjustified assumptions on which they rest, to show their disjunction with human rights principles and standards, to question whether justice is done in their use and application, and to seek to institute emancipating ways of seeing and knowing people with intellectual and/or psycho-social disabilities. Strategic litigation is a primary tool for doing so. The courts can authoritatively re-write ouur story of ourselves, and MDAC’s strategic litigation is critical in this regard. We need this work to advance accounts of people with intellectual and/or psycho-social disabilities that de-construct the codes they have been forced to live by, to help weave narratives of lives that show how enforced constructs of limitation rupture foundational human rights.

 

In summary, I believe that in its public education, law reform and strategic litigation efforts, MDAC is on the right track to addressing this most profound of challenges – how we are seen and known by others in ways that systematically disadvantage certain groups, and how the law and public policy underlay these constructions. I am honoured to support MDAC in its efforts to build social, political and legal relations that enable equal rights, respect and value for all.