Amid reality of medical rationing, ableist bias against disabled people in accessing healthcare must be challenged
It is not a matter of coincidence that during medical emergencies, we see the system saving those who are 'most useful to society' while disabled people are pushed to the periphery.
What is ‘normal’? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.
In an article discussing the trauma and mental health effects of systemic ableism, Nidhi Goyal, gender and disability rights activist, says: "'Survival of the fittest' was not just a Darwinian theory in our Class Six school textbooks; over the years, we observe that it is a concept in which the majority believes. What then happens to those who are considered unfit – defective, less, disabled?”
The words 'survival of the fittest' became exceedingly common as the pandemic spread across the globe. But what does the phrase even mean? Especially now, as we heard people say and assume that it was the only way to get through this pandemic. We witnessed organisations, medical institutions and governments saying “only the sick, the elderly and the disabled will die”. And with that, we were faced with the very real possibility that disabled, sick and elderly people will not receive the care they need in these times. Of course, whose lives matter in times of medical emergencies and disasters are the ones most able, capable of surviving and willing to build a new life, be 'productive' and 'contribute' to society.
It is never really said in these words. But we can see how in recent months, hospitals and medical institutions were forced to make decisions that were entrenched in ableism. For me and many people in the disability community, these words are far from new.
Medical ableism is systemic
In my previous column, I wrote a bit about how ableism exists in our language and our beings. However, we also get to know from the experiences of disabled people that ableism is structural and present everywhere. Therefore, it is not a matter of coincidence that during medical emergencies, we see people saving the lives of those who are 'most useful to society'. Looking specifically at this pandemic and others, we know how triage protocols usually come into force: they are enforced amid a scarcity of hospital beds, ventilators, or resources in general. One would have to pick and choose as to which patients would be provided treatment.
Andrew Pulrang, disability rights activist and co-founder of the #CripTheVote movement addressed this in his column in the beginning of the pandemic. He referred to this “prioritising” of patients, revealing that disabled, sick and elderly people never made it to that list. This argument is often understood to be objective, a solution arrived at in the most impartial fashion. But is it really? In his piece, he quotes Alison Barkoff, Director of Advocacy at the Center for Public Representation, (CPR), who points out that this kind of medical ableism isn’t new. She says: “There is a long history of discrimination and bias against people with disabilities in accessing healthcare, often based on stereotypes and perceptions about the value and quality of lives of people with disabilities.”
But many of these biases themselves stem from knowing little about the lived experience of disabled persons and decisions often being made entirely without consultation with the disabled. By and large, our understanding still stems from this perceived 'lack' instead of being able to look beyond the 'defective/less/unfit' understanding of the body. Thus bringing us back to the acknowledgement of ableism at its core. It values certain bodies, minds, and kinds of efficiency and ability. Thus a reminder of whose bodies are valuable, respected and will be effectively saved.
As medical rationing becomes a reality in these times, it is important to ask ourselves: Whose lives it is that are being viewed as disposable? And why are these choices being made? Are they really objective?
One of the major concerns about those making these decisions is the gap in how non-disabled people view disabled lives — difficult; needing support; burdensome. This is in contrast with how disabled people see their own lives — rich; valuable; full of endurance and wisdom; diverse. This is not to say that all disabled people have easy lives, but the lived reality and wisdom of that experience cannot be denied or avoided. Doctors, physiotherapists, friends, family, and colleagues can sometimes hold the view that if one (in this case, me) spends a lot of time in bed, then their life is somehow not worth living. That it is expensive to make our lives easier (this is true), but that expenditure, in comparison to the value of that individual, doesn’t make the cut.
The shift in many of our lives happens when we find the community, language and support to throw away ableist notions of value tied to being 'normal'. This requires fighting our own ableism and challenging society’s persistent voices in our heads. Disabled people, through their existence, resistance, and sustained interdependence, have proven that our definition of 'value' might in fact be faulty. Moreover, through our collective resistance and rejection that ‘some lives are disposable’, we can and should build a better, more inclusive world, with disabled people leading the way.
The words of Alice Wong, disabled activist and editor of Disability Visibility: First-Person Stories from the Twenty-First Century, are a powerful subject of reflection for us: “Disabled people are not acceptable collateral damage in this pandemic. I want to believe that the future is not just mine, but ours. When one of us falls through the cracks, we all suffer and lose something. Time and ventilators are scarce, but we have the creativity, moral courage, and collective power to shape a world that has space for all of us.”
This is the second part in a three-part series on ableism. Part 1 focused on language and ableism, while Part 3 will focus on ableism and intersectionality.
Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the Co-Founder of The Curio-city Collective.