The incredible ordeal of Landon Webb, a Nova Scotia man with an intellectual disability, is a wake-up call for deep-rooted policy reform in laws governing the rights of people with disabilities.
Mr Webb is now 25. Five years ago, a court granted his parents guardianship, despite Mr Webb being an adult, on grounds that his intellectual make-up made him vulnerable to exploitation. He now wants to remove the guardianship, move out of the rehab centre where he has been living (voluntarily), and live independently with his girlfriend and children.
His parents have placed him in a locked facility for assessment and therapy, and successfully saught to have his freedom of speech curtailed by taking away telephone and internet privileges. Newspaper editorials have testified to Mr. Webb’s articulate expression of his views about his situation and his rights.
In late December, 2015, a judge overturned the restriction on Mr Webb’s freedom of expression, and the Provincial Minister Responsible for the law on guardianship has admitted the need for reform.
How should we protect individuals who may be vulnerable to exploitation online, while, at the same time, respecting the individual agency that underpins our dignity as human beings?
I raise this case to highlight the challenges of expanding inclusion in online communities. Our concept of human agency is very black and white – you either are, or ar not, recognized by the law as being capable of individual agency.In online interactions, our primary marker of individual agency is informed consent – that ‘I agree’ checkbox that we select when we enter a new transaction.
Michael Bach, of the Canadian Association for Community Living, has done a lot of thinking about a new definition of agency, uniquely keyed to the needs of people with disabilities when they are online. He opened the recent (2015) Designing Enabling Economies and Policies (DEEP) conference at OCAD University with a warning: We should not casually adopt offline concepts of individual agency into the online context.
Informed consent, he said, is too narrow a concept to reflect the experience of people with cognitive or intellectual disabilities.
“Inaction on our part may spell exclusion from digital culture for our brothers and sisters.”
Instead, Bach introduced a reformulated legal concept of ‘supported decision making’ – a definition of agency that validates the intentional acts of individuals with disabilities through the perceptions and communication of the immediate human network around them. He and Lana Kerzner provide a detailed account of this shift in thinking and its implications for law reform in a paper for the Law Commission of Ontario at http://www.lco-cdo.org/en/
In other words, whether or not a person understands all of the ramifications of the ‘I agree’ check-box, caregivers can usually understand the intention associated with the act of communicating online. Recognizing the social nature of agency in this way may open the door to a rigorous legal foundation for online communities that include fully-entitled members with intellectual or cognitive disabilities.
Of course, conflicts of interest between people – such as that between Mr Webb and his parents – are not directly resolved by a legal concept. But then again, the law never did resolve human conflicts, it only gives us guidance as to how to manage it in ways that preserve individual dignity and social justice.
And how this liberating legal theory plays out in technical terms has yet to be tested — I, for one, look forward to more experimentation in the community, online, and in legal circles.