Blogpost on COVID-19 and intersectional lessons by Professor Gerard Quinn, Raoul Wallenberg Chair of Human Rights and Humanitarian Law.
A quick search for ‘intersectionality’ on Google reveals over 13 million results! As a concept it remains wooly and purely suggestive. Unfortunately, it takes a tragedy like Covid-19 to bring clarity to ideas and hopefully, over time, new ideas will help us deal better with tragedy.
And so it is with disability and old age in the midst of the Covid-19 crisis. Many have commented in the past, and mostly in the abstract, on the common experience of both groups: their relative invisibility and consequent unequal treatment, segregation and isolation. Excessive identity politics can conceal as much as it reveals. The truth is that the common experience of the relative invisibility of both groups have led to isolation and segregation. In particular, both groups have been subjected to institutionalization in its many different forms as well as unequal treatment with respect to health care.
There are, of course, differences. Older people tend to be more politically active everywhere. Certainly, the political process seems to be more alive to their needs. In the past at least, elder politics has had much to do with resources and little to do with justice or their human rights concerns. And persons with disabilities, though numerous, have tended to have had limited political impact. Ever since the adoption of the UN convention on the rights of persons with disabilities (2007) they are increasingly strident in advocating for their human rights.
There is no equivalent treaty on the rights of older people although that is exactly what the UN Open Ended Working Group on the rights of older persons is currently considering. As more and more older people are framing their grievances in the language and value of rights it is natural that common cause with the disabled would come to the fore.
Three issues in particular during the Covid crisis draw out the value of intersectional analysis in the context of disability and age.
The first has to do with the more extreme consequence of segregation that affects both groups – institutionalization. It cannot have escaped attention that at least one third of all Covid-related deaths have reportedly affected older persons with chronic conditions (disabilities) living in nursing homes or other congregated settings around the world.
Living in these places makes it instrinsically difficult to isolate. Protecting the service personnel is also a major challenge. Living with any concentration of people who are categorized as ‘vulnerable’ to the disease is a disaster waiting to happen.
Despite popular misconceptions, there is nothing natural or inevitable about institutionalization as a policy choice for older people (or anybody for that matter). Interestingly, Israel has no nursing homes for persons with dementia – they are enabled (with support) to continue to live in their own environs. The demand for independent living for persons with disabilities started first in California in the late 1960s.
It galvanized the disability community there to become politically engaged (and not just about money or welfare). Eventually this led to the enactment of the American with Disabilities Act (1990) which is one of the most widely copied pieces of legislation in the world.
And this was one of the main sources of inspiration for Article 19 of the UN convention the rights of persons with disabilities on the right to live independently and be included in the community.
Sometimes, at least before Covid, elder rights groups tended to defend the existence of institutions. Certainly, and in a European context, the sector is enormous. A lot of taxpayers’ money goes into tax reliefs, capital grants and other subsidies for them. As a policy options, they are somehow considered ‘natural’ or at least more convenient (and cost efficient) from a service delivery point of view.
Unlike the disability context where the assumption of the inevitably of institutions has long been punctured, the ‘naturalness’ of institutions for older people has yet to be deconstructed. It is not clear that such sites are indeed cost-effective.
The available evidence from Israel shows that health care costs can be kept within manageable bounds if the health condition does not deteriorate (as it tends to do in a congregated setting). It may well be that flanking measures are needed – like the relaxation of labour laws to enable flexible working hours to be able to care for a parent as well as more serious family supports. A new community living policy imagination is certainly possible – and arguably needed after the disaster of Covid.
The second common issue experienced by both groups has to do with equal treatment – or really unequal treatment – when it comes to health care and related services. Earlier on in the crisis, when it appeared that scarce medical resources might have to be rationed, there was a spate of ethical/policy guidelines around the world that hinted at this (and sometimes very explicitly).
The disability sector has been more successful at pushing back. An instructive case in point concerns the relevant State guidelines in Pennsylvania that appeared to allow rationing to occur on the basis of certain named disabilities (like intellectual disabilities).
After prodding from disability groups, the Office for Civil Rights (OCR) at the US Department for Health and Human Services required Pennsylvania to change its guidelines (April 2020). It specifically agreed not to ration on the basis of named disabilities, nor on the basis of judgments about relative ‘quality of life’ nor on the basis of judgments about the ‘value of life.’
It is strongly suggested that exactly the same ought to apply for the benefit of older people. Human rights are highly relevant to the rationing process (if one is indeed needed). Indeed, without a human rights input the very legitimacy of the process can be called into question – hardly something that aids efficiency.
Third, and in common between both groups, the absence of their collective voice in the process of handling the crisis is almost universal. International law does not prohibit retrogressive measures. But there is a proviso.
The persons most directly affected must be consciously thought of in many retrogressive measures.
That was probably not the case during Covid for most persons with disabilities and older persons. And their voice and input should be sought and factored in to any emergency planning and response. That did not happen. This more about just being nice to people.
This goes to the very efficiency and indeed legitimacy of the process. Anything that affects the legitimacy of the process calls into question the long-term commitment of the public for sacrifices. Needless to say, all countries have challenges here.
When the crisis is over there will opportunities to learn from it and to translate this learning into policy changes going forward. We owe it to all our citizens. In the disability context this will undoubtedly serve to reinforce the trend away from institutionalization and lead to greater insights into how to secure the equal right to treatment (without direct or indirect discrimination).
In the age context, work continues in the UN Open-Ended Working Group for the possible drafting a new treaty on the rights of older people. It is important that the intersectional lessons from this crisis are adequately taken on board during the drafting of this new instrument. And they principally have to do with the wisdom of residential institutions for older persons, the need to secure equal treatment without prejudicial judgments about ‘quality of life’ and the need to find better ways to co-produce emergency responses with the communities most directly affected.
Research institutions can help this process by tracking the intersectional impact of institutionalization and unequal treatment on both the elderly and persons with disabilities. More research is needed to deconstruct the arguments for institutions for older people and to sketch workable alternatives. More input and impetus is needed to make the process for drafting a treaty on the rights of older people real and inclusive.
This is human rights work at its best – helping to inform a completely new policy imagination based on intersectional learning.
This is a series of updates regarding the Coronavirus from Human Rights Experts – read more here