By Vanessa Huang
In a recent essay, disability studies specialist Lennard Davis declared, “In regard to disability, the ableism that puts on a compassionate mask in milder times now reveals its brutal face.” Ableism, which refers to prejudice against disabled people, has long existed, with mass involuntary sterilisation of disabled people sweeping the US beginning in the early 20th century, but the pandemic that has ravaged our communities and sequestered us indoors has at last made people comfortable saying the quiet part out loud: disabled lives are seen as worthless.
For all the talk of inclusion, disability’s patronising public image is centred on ‘being kind’ more than anything else. From the ‘inspiration porn’ comments all over social media to self-congratulatory ‘awareness days’, these cringe-inducing but seemingly benign acts obscure the terrifying reality of what it means to be disabled in a mostly non-disabled society. I am constantly reminded of the human rights violations that disabled people still face when I read about the autistic man institutionalised, essentially in solitary confinement, for over twenty years against his will, or the conservatorships that continue to restrict the freedom of disabled people even after the uproar of #FreeBritney. Ableism is far from dead, rearing its ugly head when I hear fellow LSE students engaging in casual philosophical debate about the value of disabled people, arguing that disabled people should all be killed for the overall betterment of society in the name of utilitarianism. And this is all seen as perfectly justified under the view that disabled people cannot make our own decisions, that we live pitiful lives, and that we contribute little value to society.
Never has the devaluing of disabled lives been more blatant than under Covid. In hospitals, ‘do not resuscitate’ orders (DNRs) identify patients that will not be resuscitated if they fall critically ill. Typically used for end-of-life patients after lengthy consultation with the patient and their family, DNRs have been thrust upon disabled people at alarming rates since the start of the pandemic, many of whom report feeling pressured into accepting them. In 2020, a group of autistic adults, without having provided consent or even taken part in any prior discussion, received letters from their GP, informing them that, although these were not in place, they needed DNRs. Despite widespread outrage among the disabled community, little attention was given by mainstream media and such practices have even continued, with similar incidents arising during the second wave.
Even in the absence of blanket DNRs, triage policies all across the globe, citing the limited availability of hospital beds and ventilators, prioritise the lives of non-disabled people. Erroneously propagating the idea that disability equals poor health, the UK National Institute for Health and Care Excellence’s (NICE) guidance recommended placing patients that are less able to carry out daily activities without assistance further down the priority list when allocating critical care resources. Disabilities, overall, have no impact on health. While some disabled people will inevitably have lower recovery rates compared to the average non-disabled person, these ill-informed triage policies also apply to many people whose disabilities, according to Scully (2020), make them no less likely than similarly aged peers to make a full recovery with treatment for Covid.
Most dangerous of all, though, is the insistence that being disabled makes life barely worth living. On the contrary, there can be a lot of joy in disabled life. As Amundson (2010) finds, not only do disabled people consistently provide higher quality of life ratings than the estimates of a non-disabled observer, it is also not uncommon for disabled people to reject the idea of a cure for their disability. And yet, this narrative that disability destines one to a life of suffering permeates much of the non-disabled discourse on disability, such as in 2019, when the Trump administration proposed a policy that would entail cutting disability benefits for people that appeared ‘happy’ on social media. In other words – if your existence is not pathetic, you must not be disabled.
Critically, disabled suffering is seen only as the result of physical or mental limitations – the notion that we are at least partially disabled by society is largely inconceivable. The “oppressive master narrative,” as Dr Joseph Stramondo puts it, portrays disability as a major limiting factor, when the narrative itself limits individuals far more than any disability. The assertion that we have such a low quality of life is never accompanied by an acknowledgement of ableism and inaccessibility (where disability often means being forgotten, ignored, or deliberately excluded), an affirmation of our lived experiences, and a commitment to doing better. Taking into consideration the struggles that disabled people face offers a chance for non-disabled people to treat disabled people like adults and to centre their voices, instead of deciding that we may as well be left to die.
When we talk about the pandemic, we often talk about personal responsibility. A non-disabled individual’s personal responsibility may involve wearing a mask, social distancing, and getting vaccinated. A disabled person’s personal responsibility is not enough to protect them. In the US and UK, disabled people mobilised to overturn triage policies, provide mutual aid, and distribute PPE, illustrating the power of collectivism and interdependence in a world fixated on individualism and free choice. Were it not for relentless campaigning from disability activists, the incessant casting aside of disabled lives would have resulted in nothing less than state-sanctioned eugenics.
Sociologist Arlene Kaplan Daniels coined the term ‘invisible work’ when referring to the tradition of women’s unpaid labour. In an essay for the Guardian, Jan Grue extended this concept to disabled people. To be disabled is to perform an extraordinary amount of invisible labour simply in order to get by in a world that does not accommodate you. The spirit of the disabled community is one of resilience, exemplified by the many activists that have stepped up to fight for disability rights, all while being left behind by a world that should have worked to protect the people most vulnerable to the virus. Disabled people are not expendable, necessary casualties, the victims of natural selection, or any of the other wildly hurtful suggestions I have heard from non-disabled people trying to justify the fact that disabled people, including those that were not immunocompromised, represented 60% of Covid deaths in the UK, while making up less than 20% of the population. When we decide that disability itself must be tragic and scary, we miss the ableism that prevents so many people from thriving and becoming their best disabled selves. I hope that the world will recognise the value of disabled lives, and that we choose to eliminate disabling barriers in society, rather than eliminate disabled people.