Disabled lives matter: Covid-19 puts a spotlight on discrimination

A now familiar feature of everyone’s lives is the foot-operated hand sanitising station at the door of a shop. But how do people who cannot use their feet get their dose of sanitiser? Schoolchildren don masks — but how do children with hearing disabilities communicate with their friends if they cannot lip-read?

And how do people with mental disabilities who already felt isolated prior to the pandemic cope with living in lockdown?

Thembelihle Ngcai, a journalist, activist and powerful voice among the people-with-disabilities (PWD) community, has spinal muscular atrophy type 3, a rare degenerative neuromuscular disease. As a wheelchair user, Ngcai faces the hand-sanitising challenge mentioned above: if she is alone entering a shop, she cannot sanitise her hands, increasing her risk of catching and spreading the virus.

Dr Bianca Birdsey, an ear, nose & throat specialist and mother of three children who are all deaf, attests to discriminatory practices faced by those with hearing impairments. The widespread wearing of masks makes lip-reading impossible.

Practices that are merely an inconvenience for able-bodied people often present insurmountable difficulties for people with a disability.

Philosopher Judith Butler goes to the heart of the matter: “What qualifies as bodies that matter, ways of living that count as ‘life’, lives worth saving, lives worth grieving?”

This is a question that everyone needs to consider when thinking about the lives of PWDs.

We have been barraged with information about the novel coronavirus. But the personal and socioeconomic realities faced by PWDs have been pushed to the margins.

Same old story of discrimination

Unfortunately, this is not new. As in the rest of the world, South African PWDs have historically faced discrimination. It comes as no surprise that this group of people is once again ignored and left out of the collective response, despite the many reports regarding deaths worldwide of vulnerable people in care homes for the elderly and the disabled.

As a woman with disabilities, I am personally dedicated to the project of bringing PWD voices to the fore, voices not often heard in the mainstream media. As the hackneyed expression goes: out of sight, out of mind.

Not any more.

I have joined Quote This Woman+, a nonprofit organisation intent on amplifying women’s and other marginalised voices within the media.

And here’s what I have to say.

Discrimination against PWDs in SA is compounded by the legacy of apartheid. Social inequality remains rife and has different consequences for all those still marginalised based on their disability, race, gender and class.

Equitable access to employment has always been a challenge to PWDs — even more so within the framework of the pandemic.

Dr Diane Bell, a prominent disability activist and board chair of the Carel du Toit Trust — which helps children with hearing impairments — notes that there has been an uptick in job losses and retrenchments of PWDs.

Wheelchair-user Ngcai relies on the aid of a personal assistant (a term the activist prefers to “personal caregiver”) in daily life, as do many PWDs. But with reduced (or no) income, PWDs have had to retrench personal assistants.

 Ngcai says many South African PWDs have had to take this step, which adds to the overall increase in economic inequality, which is often skewed along racial lines. Evidently, discriminatory practices levelled against PWDs affect a lot more people than we think.

Barriers to health-care services

PWDs face stark financial, physical, and attitudinal barriers in attempts to access health-care services. A recent report by a human rights-based monitoring initiative, titled “Disability Rights During the Pandemic: A Global Report on Findings of the Covid-19 Disability Rights Monitor”, found that “these barriers included unaffordable medications … inability to leave home due to curfews, and loss of personal assistance services”.

In SA, those PWDs living in rural and remote areas face additional barriers. Accessing food and medication is always a challenge, particularly so in lockdown circumstances. Moreover, accessible transport is almost nonexistent.

Even if PWDs manage to get to hospitals or clinics, they are met with blatant prejudicial treatment. Respondents surveyed for the disability rights report said health-care providers in SA were advised to turn PWDs away if there were not enough hospital beds.

“Triage guidelines explicitly or implicitly instructed health workers to decide on a person’s right to life based on their disability,” the report says. It should not have to be said that triage discrimination against disability goes against the South African constitutional directive that all people be treated equally.

The arrival of the vaccine has been welcomed by South Africans with a sigh of relief. But Bell, Ngcai and Birdsey point out that PWDs have not been prioritised in the vaccine rollout.  Attempts to rectify this have been to no avail. Bell says: “Again, we have written to government but received no response.”

As an epileptic, this point is particularly distressing to me. If I contracted the coronavirus, I would be more likely to have a seizure — an experience that would be both scary and debilitating. This fear is felt by a multitude of PWDs throughout SA, in different ways and for different reasons.

The myth that PWDs have poor quality of life,  as well as the belief that disabled persons are not active economic citizens, have entrenched the idea — whether implicitly felt or explicitly stated — that their lives  are not lives worthy of living.

I return to Butler’s question: “What qualifies as bodies that matter, ways of living that count as ‘life’, lives worth saving, lives worth grieving?”

My answer: disabled people’s bodies do not matter.

Their lives are not considered to be worth saving.

No-one grieves for them, outside of their friends, family and lobbyists.

Hard-won rights for PWDs, resulting from decades of grassroots activism and institutional politicking, have been cut off at the knees.

“Essentially, the economic and personal impact of the pandemic on PWDs has served to stifle their collective progress towards realising full inclusion and their human rights,” says Bell.

And discriminatory practices levelled against PWDs will not end when the pandemic finally blows over.

While we live under the shadow of Covid-19, we need to take action to resist the ongoing marginalisation of PWDs.

It’s time to fix the problem

In the short term, all government departments should appoint disability advisers and implement resource strategies on disability. Collective recovery efforts must ensure that rights to inclusive education, freedom from ill-treatment, to life and to health for all will be protected.

This would include an equitable approach to triage protocol. Emergency responses would also have to be disability-inclusive and recognise that “those experiencing intersectional forms of discrimination” will require tailored responses.

In the long run, education-driven initiatives must include topics on disability to make the public aware of discriminatory social and economic practices directed towards PWDs, and how these affect their daily lives. More platforms should aim to amplify the voices of PWDs — in the media (as Quote This Woman+ does), in workplaces and in schools — so that PWDs can share their stories and demands for change, and be heard.

The lives of people with disabilities are worth living, worth saving, and worth grieving.

• Den Besten is a master’s student in the department of philosophy at Stellenbosch University. Her dissertation focuses on the intersection between gender and disability. She works as a volunteer at Quote This Woman+