When living with a disability, there are certain behaviors, questions and actions from both society and individuals that are no longer surprising. Society decides your limitations, abilities, freedoms and necessities. Individuals -often strangers- ask personal questions, insist on praying with you (right then and there), and attempt to relate to you with their own stories of mild injury or illness. What has surprised most of the disability community is that, in the face of one of the deadliest pandemics in history, those who are charged with managing health and protecting the vulnerable will be forced to make tough calls about rationing resources and lifesaving equipment. And that because of someone’s disability, access to these things could be stripped when they need them most.
I distinctly remember watching broadcast coverage of the COVID-19 outbreak as it was unfolding in resource-strapped regions of Italy. Hospitals were running out of ICU beds and ventilators, and there wasn’t enough medical staff to attend to the sick. Aside from determining who would benefit from lifesaving interventions, doctors and nurses were asked to do the unthinkable- decide who was worth saving based on judgements about a person’s quality of life.
The World Health Organization (WHO) defines Quality of Life as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment.” It does not however, define it as one person’s perception of another person’s position in life. To put it simply, one’s quality of life is a completely unique to what a person believes about his or her own self, and what it means to live fulfilled. For that reason, the concept of “quality of life” has long been a delicate issue for the disabled community.
In the nine years since my injury, I have worked incredibly hard to live a “normal” life. I rejoined the workforce, re-learned to drive, got married, bought a house, started a family, maintained a solid group of friends and healthy rotation of extracurricular interests. But, the COVID-19 pandemic has made me more aware than ever before of how another person might view how happy I am or how “good” my life is. To a stranger who only sees the injury, and not the life I’ve worked hard to build, I’m someone who doesn’t have the use of her legs, can’t control some aspects of her body, takes medication to manage the invisible parts of her injury and sometimes relies on others for daily tasks. But does that mean I am any less worth saving in a critical medical scenario?
Unfortunately, the pandemic has revealed that the answer is, in some cases, yes. In the UK, doctors were advised to refer to United Kingdom’s National Health Service (NHS) and the NICE Clinical Frailty Score, and here in the U.S., states such as Alabama have official language directing medical professionals to consider that “persons with severe mental retardation” are among those who “may be poor candidates” for lifesaving interventions; Kansas and Tennessee singled out people with “advanced neuromuscular disease” and Washington state directed doctors and nurses to make decisions based on “baseline functional status,” which involves factors such as physical ability and cognition. For what it’s worth, after facing backlash from advocacy groups, on March 28, 2020, the U.S. Department of Health and Human Services’ Office for Civil Rights issued a bulletin reminding health care providers that discrimination based on disability and age is prohibited by law.
Still, terrified of what this might mean for my family, I actually considered having a photo button made of my daughter that I would wear every day, in the event that I ended up isolated in a hospital room, unable to communicate, and with a medical professional faced with my medical history, the visual of my wheelchair, and the decision about whether I was more or less worthy of lifesaving intervention. Of everything I would want them to know, it was that I am a mother of a young girl, I am active in my child’s life and someone is counting on my return home. I can’t quantify the number of nights I laid awake wondering what would happen to me, and where the line was drawn. Even aside from me, what about other members of the disabled community? Would my other disabled friends and colleagues’ lives be considered worth it?
Wondering what difference, we as communications and business professionals, can make in a situations like this, I’ve thought a lot about how we have the power to influence change through our counsel to clients in a COVID-19 and post-COVID-19 world. With so many companies leaning into their purpose and philanthropic efforts, we can counsel them to be deliberate in specifying that their products, services and relief (i.e. donated PPE, funds, etc.) should be applied equitably. In addition, when advising healthcare, health system or hospital clients, we have the opportunity to help create clear internal communications to frontline healthcare employees should specify nondiscrimination at the point of care.
In a time when more individuals and brands are having their own awakenings about the meaning and importance of promoting social justice and DE&I has garnered more emphasis than ever before, its critical for our industry to continue the dialogue about how we can leverage our unique position as communications counselors to make a difference.