By Catherine Frazee
Ten minutes into an interview with Laura Flanders in March of this year, VPS Advisor Jutta Treviranus describes a recent experiment in which she tested the learning models of 6 driverless car prototypes. Wanting to test these systems with an unexpected situation, sheintroduced a simulation based on video footage of a friend who propels her wheelchair precisely and efficiently, but always in a backward direction. Confronted with this novel situation, all 6 ofthe vehicles decided to proceed through the intersection, effectively running over the simulated wheelchair-using pedestrian.
When Dr. Treviranus presented her research findings, all of the manufacturers in question assured her that these early prototypes had not been provided with sufficient data, and committed to improve the learning models for better, more reliable recognition of disability. Sometime later, after the learning models had been loaded with “a lot of data on people in wheelchairs at intersections”, she repeated her experiment.
The result? “They ran her over with greater confidence”.
The driverless car anecdote provides us with an important lesson about what happens whendecision-makers fail to pay attention to the margins, or what Dr. Treviranus calls “the weak signals” that are by definition deemed insignificant in broad statistical studies. Traditional methods for analysis of large data sets, and decisions guided by those conventional forms of analysis, simply reinforce existing patterns of exclusion and leave us with a more confident and
authoritative form of “Majority Rules”.
And the result, as this cautionary tale vividly demonstrates, is of life and death consequence.
Over a two week span in January of 2020, Canada’s Department of Justice hosted an online public consultation on expanding access to medical assistance in dying. The survey was answered over 300,000 times, though there is no way to ensure that it was answered by 300,000 distinct individuals. The only demographic information captured in the survey was the home province of the respondent, and whether they lived in a rural or an urban area.
The consultation asked whether or not medical assistance in dying should be provided in instances where a person is suffering, has an illness, disease, or disability, and is not nearing death. The consultation did not capture whether the people who were responding to the survey themselves had an illness, disease, or a disability or whether they were otherwise marginalized. The consultation was a litmus test of public opinion - a tool to capture the public’s impression of a socially and morally complex policy impacting a stigmatized minority population.
Dr. Treviranus cautioned in her interview that “if the majority rules, then there will always be someone left marginalized.” Though most people do not operate their wheelchairs in reverse, some do. Though most Canadians do not fear the devaluation and discrimination that will arise if having a disability becomes an acceptable reason to end a life, some do. By not disaggregating the data, we may be silencing those with the most to lose.
Further into the interview, having considered the driverless car scenario and its implications, Laura Flanders reflected upon the pioneering role that American journalist Ida B. Wells played in the late 19th century. Reporting from the margins of mainstream media, Wells fearlessly and meticulously documented the horrors of lynching in America. Her reporting ran totally counter to all official and prevailing data. As Flanders observed, Wells’ voice was a “weak signal… She was sounding an alarm, which by nature means a new sound that you haven’t heard before, or that not enough people have heard.”
We ignore at our grave peril what is seen and heard and known only from the margins. Bill C7 marks a dangerous precipice in Canada, with radical expansion of MAiD championed by politicians and journalists alike. As they cite public opinion surveys suggesting that Canadians are ready to broaden eligibility for medically assisted death, we must call attention to the voices that tell a different story from the margins. If we fail to do so, the lesson of the driverless car will haunt us for generations.
This blog post provides commentary on the VPS submission, Voices from the Margins. Please explore this resource to learn some of what people with disabilities, their families, and allies submitted in the Federal government consultation on medical assistance in dying.