How the pandemic is further alienating the disabled community
From early press briefings with no sign language interpretation to resuscitation guidelines that prioritise neurotypical patients, the pandemic has brought societal prejudices against those living with disabilities to the fore, says Dr Bronagh Byrne, a Senior Lecturer in Social Policy at the School of Social Sciences, Education and Social Work at Queen’s.
‘Coronavirus does not discriminate’. Most of us will have heard this phrase at different points over recent weeks. Such a statement belies a shocking level of naivety; that for once in our lives, no matter where in the world we live, ‘we are all in this together’ and equally so. The reality is very different – this pandemic is exacerbating inequalities.
There is limited data and evidence so far about the impacts of coronavirus on disabled people. Across the globe, reports from the media, disabled people’s organisations (DPOs) and disabled people themselves suggest that there are multiple and significant impacts being experienced. In the last few weeks I have been working alongside my disabled academic and non-academic colleagues across Northern Ireland and the rest of the UK to illuminate that which appears obvious to us as disabled people, but which are evidently invisible to those shaping coronavirus policy responses.
We know that some disabled people may be at greater risk of contracting the virus due to underlying health conditions. What is less well known is that disabled people are at greater risk of contracting the virus due to deeply embedded structural inequalities. Take the first few weeks of the pandemic and the daily ministerial briefings. Sign language interpreters were not initially made available in the UK in contrast to other jurisdictions like New Zealand. This meant that information about social distancing and preventive measures were not accessible to the Deaf community. Northern Ireland, Scotland and Wales have now addressed this while interpreters for the Downing Street briefings have been relegated out of the mainstream to BBC News 24, somewhat aligned to the second-class citizenship deaf people experience in general. Similarly, the NHS 111 service for coronavirus queries has only just been made accessible for sign language users in Northern Ireland this week.
Also of concern to the Deaf community is the extent to which the use of face masks is becoming the new ‘normal’. The use of opaque face masks cuts deaf people off from society. The inability to lipread and read facial expressions through these masks potentially excludes deaf people from responding to questions in medical settings about what could be serious symptoms, receiving instructions about prescribed medication or treatment, or even just simple reassurance in what is the most frightening of times. In society at large it can place deaf people into a consciousness of fear and enforced dependency, unable to access key goods and services. The use of transparent face shields is a welcome response to this.
Social distancing presents complex challenges to disabled people who require personal assistants (PAs) to meet their basic needs. Personal Protective Equipment (PPE) is in short supply in the community and some disabled people may find themselves in complete isolation if their PA is required to quarantine and no replacement is available. For families with disabled children the suspension of services means little or no respite while children with special educational needs are finding themselves left with no learning support to facilitate home schooling.
There is deep concern that the lives of disabled people are being accorded less weight than non-disabled people; seemingly dispensable when decisions need to be made about critical care and access to ventilators. Across the globe, disabled people and their families, including parents of autistic children and carers of people with learning disabilities, are reporting that they have been asked to complete Do Not Resuscitate (DNR) orders, in case they become critically ill, with no consultation. In the UK, NICE Guidance on how doctors should decide who could get urgent care during the coronavirus crisis was rewritten after complaints that the initial guidelines suggested that disabled people could be denied treatment. Assumptions about disabled people’s perceived quality of life and associated debates about ‘whose life counts’ have always rippled under the surface. The emergent discourse around coronavirus has thrown this into sharper focus. That said, the lack of collected or disaggregated data on the numbers of disabled people who have died from coronavirus related symptoms threatens to disguise these realities.
The Universal Declaration on Human Rights (UDHR) was adopted by the United Nations General Assembly in 1948 in response to the horrors of the Second World War. Through this, the international community vowed that such horrors would never reoccur by establishing a set of minimum standards to which everyone is entitled. The first substantive article of that declaration states that ‘All human beings are born free and equal in dignity and rights.’ Today, human rights treaties are many; the UN Convention on the Rights of Persons with Disabilities (2006) at the fore.
Yet, 72 years on from the UDHR the disability community continues to fight to validate the worth, needs and rights of every individual disabled person in society. Something which has become a global endeavour. Except - instead of taking to the streets to protest, have begun harnessing the power of social media, and Twitter in particular. Social distancing rules might mean that disabled people, like the rest of the population are conspicuously absent. Nonetheless, the structural inequalities of our worlds are resoundingly present. Guidance is emerging on how many of the above issues (a mere snapshot) can be addressed. But if we really want to make a difference, then that first statement of the UDHR must underpin all our actions.