Complex networks of roots stretch several times beyond the radius of each tree’s canopy, drawing nutrients and water far from its origin. While we may quickly observe the location of a trunk, or the reach of extended branches, these roots are often invisible to us, extending in a vast interplay of support right beneath our feet.
As we are mobile and social animals, the networks that sustain us as human beings are even more difficult to spot. They might break through the surface while connecting over a coffee with a close friend, building a deck with a family member, or singing hymns with one’s faith community (virtually or otherwise).
Human roots draw from paid and unpaid supports, from government-funded services, and the day-to-day labour of unpaid or under-recognized family caregiving. We rely on social infrastructure and the medical professionals that provide our healthcare. As I write in Formed Together: Mystery, Narrative, and Virtue in Christian Caregiving, “We are all interdependent not simply on a practical level but on a profoundly existential and ethical level.” Practical needs such as food, clean water, clothing, and shelter must be met, but so must our deeply human needs to know that we belong and contribute through avenues such as meaningful employment, volunteerism, and spiritual care for one another.
The relational interconnectedness of human beings cannot be overestimated. That is why, when Canadian legislation requires that someone must “request [Medical Assistance in Dying] of their own free will” and be “able to make health care decisions for themselves” it cannot disregard the complex factors that influence and sometimes even determine a person’s seemingly autonomous decisions or even what constitutes unbearable physical or mental suffering.
In my work with Christian Horizons, I regularly provide grief training and debriefing in times of significant loss for people close to those with disabilities. In these profound moments of remembrance and mourning, it is evident that the human passing from life to death should be one of the most social and interconnected experiences of our time on earth. One of the great tragedies of COVID-19 has been the ways that even these great passages have isolated the dying person from the people whom they love and who love them in return – people who have the power to both alleviate suffering and, at times, be the source of suffering.
Bill C-7 proposes the removal of the requirement that death be “reasonably foreseeable” for people with disabilities or disabling conditions. The specific identification of the disabled, in contrast with other marginalized and under-served populations, is widely recognized by disability advocacy organizations and the UN Report of the Special Rapporteur on the rights of persons with disabilities as discriminatory in the way that it communicates or implies that there is something “special” about disability that may make the lives of the disabled particularly not worth living.
Ableism is the prevalent discrimination of and social prejudice against people with disabilities and it is like a poisonous rot that eats away at the roots of opportunity, care, and life-giving supports for the disabled. Beyond the distinct ableism codified in the Bill itself, it is evident that legislation removing safeguards to access to Medical Assistance in Dying cannot take place in isolation from needed, tangible commitments to anti-ableist efforts to uphold and further Canada’s commitments under the UN Convention on the Rights of Persons with Disabilities (CRPD).
Under the social model of disability, much of the pain and suffering accompanying the disabled experience is due to the systemic barriers, derogatory attitudes, and social exclusion of people with disabilities and their loved ones. It contrasts with the historically-held medical model of disability, which looks to “fix” an individual’s body according to normative standards of an “able body.” The social model better captures the profound suffering and loss perpetuated by societal barriers. This model recognizes the ways we are all interconnected. The quality of our lives is intertwined with the ways in which our communities include or exclude the disabled experience. Ableism destroys or corrupts many of these “roots” – opportunities for friendship, encouragement, and tangible support for people with disabilities:
Our physical spaces are made more for some than for others, and ableism severs access to many spaces, events, and services simply on the basis of physical accessibility or access to appropriate signage and communication methods.
Nondisabled prejudice eats away at potential opportunities for meaningful employment and perpetuates social systems that keep disabled people living in poverty, making basic life necessities – let alone additional comforts – difficult to access and sustain. Ableism overlaps with all other forms of marginalization, and this intersectionality underlies many of the poverty trends identified by Citizens for Public Justice in 2020.
As rot breaks apart structural integrity, so ableism leads to the under-valuation of paid and unpaid caregiving. It pervades our medical services and systems. If disabled lives are not aborted before birth, throughout their lives people with disabilities must face up to the “disability paradox,” where nondisabled people interpret disabled lives as less worthwhile than people with disabilities do themselves. A recent study in the US discovered that 82 per cent of physicians believed that people with significant disabilities have worse quality-of-life than nondisabled people, and only 40 per cent were very confident about their ability to provide the same quality of care to patients with disabilities.
COVID-19 has further uncovered the destructive forces of ableism on our priorities as a society. People with disabilities are at increased risk of COVID-19’s adverse effects. Those with Down syndrome, for example, are at least three times more likely to die due to COVID-19 complications, and yet in most provinces healthy young people working in grocery stores or other essential services are prioritized for vaccines long before an older individual with Down syndrome. In the UK, DNR orders have been issued without consent for people with learning/developmental disabilities. Throughout the pandemic, triage protocols in the US and here in Canada have come under fire for discriminating against access to life-saving measures for people with disabilities.
We each require extensive support systems to live rich and meaningful lives – networks of care that sustain us through difficult times. COVID-19 has exposed the frailty of many of these points of connection and care, and Canada’s inadequate, and at times abysmal, support for people with disabilities introduces additional layers of suffering for at least one in five people across our country, many of whom also suffer the effects of overlapping prejudice and marginalization. While there would be a 90-day “assessment period” for people with disabilities seeking MAiD, it can take the same people many months or years to access specialists or life-giving services.
Just as we each are sustained by others, so we are called to sustain one another not only through times of crisis and loss but also to share in times of flourishing and celebration. A vast and intricate landscape of often-unseen care stretches across our country. As citizens, friends, family, caregivers, employers, and members of faith communities we each have a role to play in nurturing a rich environment of support for those most at risk of exclusion, prejudice, marginalization, and the immense suffering that arises from the poisonous and vicious rot of discrimination.
Certainly we must protest the further calcification and codification of ableism in legislation like Bill C-7, whether through petitions, contacting our government representatives, or other means at our disposal. But we must also demand that any efforts to carve a “way out” for those who experience unbearable suffering are matched and exceeded by legislation and tangible action to alleviate and remedy this suffering.
Better access to elder care and palliative care, greater recognition and support for unpaid and underpaid caregivers, making room for diverse supports and services that attend not only to a person’s physical needs but their spiritual, cultural, and relational needs…. The possibilities are endless.
Just as human beings do not exist in a vacuum, neither does legislation or government action. Simultaneously, we must work to confront ableist tendencies and cultivate sustainable caregiving practices in our places of employment, our faith communities, our neighbourhoods, and even our own families.
A popular saying from Nelson Henderson is that, "The true meaning of life is to plant trees, under whose shade you do not expect to sit." More likely, however, the landscape of care that we nurture today for others is the very same environment that we will look to for shade, rest, and support in the years to come.
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