In a recent article for The Conversation, Professor Keymanthri Moodley from the Centre for Medical Ethics and Law at Stellenbosch University notes that healthcare workers will have an unenviable responsibility to make difficult and “soul-wrenching decisions” regarding prioritising who will have access to ventilators as the Covid-19 pandemic takes hold. It is important in South Africa and elsewhere for there to be protocols to assist decision-makers with what will be burdensome decisions. In a context where need outstrips demand, there is really no single right way to decide on how to ration life-saving care.
We are positioned in a very particular way regarding this issue, and we believe that putting a personal face to the debate may be helpful. A fundamental question that is addressed implicitly in many ethical codes is one that is close to us: whose lives really matter? We ask what will happen to the 15% of South Africans with disabilities who may be deemed less eligible than others to access healthcare. Will they receive equal consideration for life-sustaining healthcare in the context of the pandemic?
We have, as the phrase goes, skin in the game. Vic is a father of two young, energetic boys, a part-time lecturer and researcher, and a holder of a PhD. He is also a motorised wheelchair user, a C4 quadriplegic paralysed from the shoulders down. He is privileged, living in his own home, with electricity, running water and access to full-time care assistants who assist him with basic daily functions. His wife, Emma, also holds a PhD and is a lecturer and researcher. She too has a disability – she has a hearing impairment. Leslie is a friend, a disability scholar and activist.
Here is some of the story of Vic and Emma over the past few weeks. Before lockdown, we spoke about our fears regarding Covid-19. What would happen if we caught it? Would we be given treatment? Would Vic be ventilated? Vic is unable to cough properly because his chest muscles are paralysed, and contracting Covid-19 would most likely be devastating. We discussed how we would tell our two sons, aged 8 and 5. Vic has started writing letters to them for when they are older and he is no longer with them. Vic is our boys’ rock, a very “hands-on” dad. How would Emma explain that their father’s life was seen as being worth less than others deemed “more healthy” and more able to contribute to society?
Vic was kept alive by a life-support breathing machine for five weeks after becoming paralysed in a road accident 32 years ago and has led a fulfilling, healthy life as a quadriplegic since then. It would be a sad irony if his death were as a result of the same apparatus not being available.
Emma worries about getting ill and not being able to lip-read the masked healthcare workers. There are lovely images of plastic fronted masks circulating on social media platforms, but realistically this is unlikely to be a reality.
American philosopher and disability scholar Eva Kittay recently noted the lack of attention given by the media to those who are classified as being “vulnerable”. She shares her personal experiences relating to her daughter who has a rare genetic condition and who has severe limited cognitive and motor abilities. Kittay compares Covid-19 and people with disabilities to “sitting on that sand beach watching and waiting for a tsunami”.
Similarly, journalist Emily Beater argues that political and cultural attitudes in talking about coronavirus excludes disabled people. Our personal experiences of people’s insensitivity towards those living with a disability are echoed in Beater’s article. We put these down to a lack of education and ignorance and have received many awkward comments and questions over the years.
When it comes to Covid-19, as people who may be particularly vulnerable, we feel angry when people we know ignore the lockdown rules and use the “We will be fine and it’s just others that need to worry” excuse. We are worried. We are so fearful that we have decided to lockdown with only one care assistant. In order to live, since his accident Vic has needed 24-hour care, and we have traditionally employed two care workers on a shift basis. Now, because of the pandemic, we have had the same person in our home 24/7 for weeks. For all this time he is unable to be with his family. This is because our alternative care assistant cannot guarantee that he is able to self-isolate for two weeks because of where he lives. The risk is just too high.
Our story is one of privilege, but many of the issues are not unique. How will people who are deaf, whose primary means of communication is sign language, understand what doctors are saying? How will people with visual disabilities and children with autism, for example, cope with not being permitted to be accompanied by family members or a friend? Will people such as those with quadriplegia receive assistance to change their position regularly to reduce health-threatening pressure sores, a wholly preventable cause of death but easily fatal without care?
As a family, we try to maintain a positive outlook on life. Covid-19, however, has forced us and many others to consider our quality of life, future and mortality as never before. In the afternoon before the lockdown we paid a photographer to take family photographs in a local park. We smiled a lot and had a relatively good time. Yet we experienced an underlying anxiety of what was to come Potentially, these could be our last photographs together.
Moodley’s article concludes with the need to have a standardised national prioritisation plan in place in order to effectively respond to the pandemic. We agree fully. At a time of crisis we need to do the best we can to use resources in as fair a way as possible. As most South Africans are aware, health resources in our country have historically been withheld from people on the basis of race, gender and age. Members of the LGBTQ+ community continue to face difficulties accessing appropriate healthcare.
It is hard to know, especially in times of crisis, how rationing decisions are made, with many of necessity being made on the spur of the moment, and drawing on unstated assumptions. This is inevitable, and not a judgment on those forced to make such decisions in a time of crisis. At the heart of rationing decisions is an implicit question about who counts fully as a person, whose life has value and meaning, whose life means something to the lives of others?
We do not have the answers to all the difficult questions, but our appeal is simple. Don’t assume that a life lived with a disability, however difficult that life may appear from the outside, is without meaning, worth and value. We ask everyone to take our words seriously for our own sakes, but also for the sakes of millions of other disabled people with disabilities in South Africa. Please don’t count us out yet.
Dr Vic McKinney and Dr Emma McKinney are affiliated with the University of Cape Town and the University of the Western Cape respectively. Professor Leslie Swartz is a distinguished professor of psychology at Stellenbosch University.