Blogpost on COVID-19 and inclusiveness by Anna Bruce, Senior researcher at the Raoul Wallenberg Institute and Per-Olof Hedvall, Associate professor in Rehabilitation Engineering and Design, Director of Research at Certec, Faculty of Engineering LTH at Lund University
Social distancing is disrupting our lives.
In this time of ‘social distancing’, doing what is expected of us is suddenly complicated, if not impossible. To help, or even visit, elderly parents. To interact with friends and neighbours; or to take our children to school, playgrounds, sports, or music class.
Not to mention earning a living, as employment opportunities are shrinking and the infrastructure for carrying out the work we are paid to perform diminishes. Or running our own businesses, when customers no longer frequent our premises, or have use for our products, in their isolation.
Crucially, the problem is not only that we are expected to do these things and to take these roles. The problem is that we want to. This web of roles defines our lives, what is important to us, and – ultimately – who we are.
This sudden inability destabilises us, makes us confused and estranged. It becomes harder to soldier on even with the things we still can do. In addition to emotional and psychosocial challenges, new practical obstacles demand our already shattered attention.
How will I access the goods and services I need?
‘When Will It End?’
The nagging uncertainty; when will it all end? Not to mention that we cannot do anything about it. Covid-19 and the social distancing it brings is immutable. Even if we wanted to take risks after our own hearts, society is not allowing us to do so.
Our communities have withdrawn the infrastructure we rely upon: public transport, schools, shops, services and the preconditions for making a living. Sometimes also by outright restrictions – making it illegal for us to leave our dwellings and enter the community.
Imagine if this ‘new normal’ that we struggle with, and that we are hopefully starting to find temporary bearings and routines in, will never end? Imagine if we had to tell our children and older parents that it is never going to end? This is unthinkable, but just forcing ourselves to touch upon the thought is terrifying for most of us.
Now add to this scenario that it would be only you, your children’s and your parents lot, while friends, neighbours, colleagues would go back to ‘normal’ lives – work, education, parenting, visiting and caring for their elderly parents.
And what if you knew in your heart that it could be changed, but society had decided to let the chips fall and that your lives, passions, parents, children were expendable?
What would that do to your spirits; the spirits we now in our common isolation work so hard communally to raise in order to endure this temporary social distancing? Who could you possibly be and become in such an immutable and deeply unjust situation?
Social distancing for persons with disabilities: A case of ‘worse shit – different day’.
This is the situation of many persons with disabilities. What a wide range of people are experiencing right now is what it is like to be denied access to core functions of society, such as schools and workplaces. In itself, there is nothing new in this.
For persons with disabilities, restricted access is often the normal state of affairs, with the significant difference that they often find themselves without prospect of the situation being remedied or ended.
When it will end? Probably not in any current lifetime, unless a radical mobilisation of communities would magically appear…
Workplaces are adapted to the needs of others – facilitating their professional development and earning a living – while the obstacles for persons with disabilities are approached as if they were as immutable and persistent as any virus. The current lack of public transport is not new for persons with disabilities.
Missing Important Parts of Life
Neither is the lack of functioning educational services new for children with disabilities: missed classes, missed experiences, missed knowledge, missed friendships, missed merits for the future due to lacking physical, pedagogical and psychosocial infrastructure. This is no news for children with disabilities and their parents.
Rather it is only exacerbated by the current situation, as the ‘special’ solutions which are traditionally used to mediate disadvantage are always the first to go when things get turned upside down in schools by new challenges and missing staff. Covid-19 is no exception.
For parents of children with disabilities, not being able to take childcare and educational services for granted is everyday reality. And when the child cannot go to school, when they do not ‘fit in’, it does not end with sharing the pain, anger and sorrow of the excluded child and fighting alongside them for their rights.
In addition, parents of excluded children are not afforded the current understanding for the way the lack of child care and educational infrastructure affect working opportunities and performance. No ‘discount’ is granted, only judgement.
Our Societies Fail To Provide Access
As if the problem is the child and the parent, not societies failure to meet their needs as they meet the needs of others, by facilitating the life-work balance through childcare and education.
Caring for parents in their old age can similarly not be taken for granted by their grown children with disabilities. Shops are inaccessible, transport and activities even for older persons are not always accessible Neither are the smaller living arrangements affordable to parents when they are no longer working.
For parents with disabilities, accompanying children remain an even greater challenge, often making it impossible to share the experiences of their children and support them in their joy and their pain; in sharing the end of the year music recital or potentially frightening visits to the dentist.
Exclusion of persons with disabilities from the community is a violation of human rights.
Is this not a blatant denial of human rights? Of course it is. The truly revolutionary aspect of human rights lies arguably in the ‘human’, not in the ‘rights’. Some people have always been able to secure the life opportunities listed in human rights instruments; there was little new about the lists in the Universal Declaration on Human Rights and the two UN Covenants as such.
Instead, the revolutionary move in these early UN instruments was to proclaim that these life opportunities – education, culture, employment, political voice, family, movement, expression and so on – should not remain privileges for some, but instead become rights for all. Consequently, these ‘human’ rights have always belonged to persons with disabilities; this promise being even the most central feature of these rights.
However, the pervasive denial of human rights to persons with disabilities has normalised this injustice to the point where it is hardly visible to us.
‘All Human Rights Belong To All’
Human rights are about how society responds to the requirements of the individual. In the case of disability the focus has stubbornly remained on problematising the body and mind of the individual, rather than how social organisation and ideas of persons with disabilities as ‘different’ have led to the denial of rights. And so this idea of difference has done unmeasurable damage. From outright denial of the rights we all have, to the misapplication of those rights as in segregated schools, workplaces and residential institutions.
The Convention on the Rights of Persons with Disabilities (CRPD) set out to once and for all relegate to the past this societal reflex to exclude and destroy that which is perceived as different.
The CRPD reiterates that all human rights belong to all human beings with disabilities. It outlaws segregation and exclusion of persons with disabilities from life, or enabling life only on lesser terms. It banishes any remaining ideas of persons with disabilities as less worthy, less likely to benefit from the things we all want and need, or as less capable of fulfilling life’s roles. Instead, it demands societies and communities to change so that they are accessible to all – to develop practices that expect human diversity and cater to it on equal terms.
This is in stark contrast to the current living conditions of persons with disabilities, and unfortunately also to global disability law and policy. To end this current segregation, exclusion and denial of rights of persons with disabilities – this perpetual social distancing– change is required on many levels.
All infrastructure and services for the general public must be useable for persons with disabilities. In addition, specific services such as personal assistance must be provided when this is needed to ensure the enjoyment of rights.
Article 19 of the CRPD on Living independently in the community is at the heart of targeting this exclusion. It states ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’ and all States Parties to the CRPD must ‘take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’.
Someone reading this text might be wondering when this will happen? When will the misrecognition and systematic social segregation of persons with disabilities end? Up until recently that question has not even been on the table, almost as if it was unimaginable that it will end, but global responses to current events inspires new hope.
‘Social distancing’ – An opening for the right to live in the community through Universal Design?
This not the first time in history that people are being denied access to the community, by that same community. The denial of community, now experienced by all, reveals how our lives were previously facilitated by different forms of infrastructure and practices.
By denying us access to the community, Covid-19 reveals our dependencies, and how fragile the enjoyment of our human rights is. What the current crisis offers is an opportunity to experience and learn what shifting circumstances and dependencies entail in terms of vulnerability.
Not that the dependencies as such are new, they have just become immutably crippling to a larger portion of society than before. But they were there all along. If we care to look, we see that community was never open to everyone.
It is ironic that the right to live independently in the community was explicitly formulated for the first time in international human rights law through the adoption of the CRPD in 2006 as a ‘disability specific’ right.
Now, 14 years later, the relevance to everyone of this right is painfully clear. It illustrates that a right is only visible for (and to) those who are denied it. This has effectively hidden that the relevance of each right is not decided by human diversity, but rather on current responses to diversity.
Pull away current facilitating responses, and the relevance to all magically appears, shattering the chimera that the right is only relevant to some due to their ‘difference’, impairment or otherwise inherent vulnerability. When the vulnerability of all is no longer hidden behind protective layers of social facilitation, it becomes clear that the vulnerability of some was a creation, just as the lack of vulnerability of others was a creation.
Another ‘first’ in international human rights law through the CRPD was the fore fronting of Universal Design (Articles 2 and 4) as the point of departure for making the community inclusive to all. Universal Design is an approach to the design and development of new technologies, environments and services, explicitly targeting all potential users and use cases, not just the most common 20 percent.
Universal Design offers ways of working with aspects related to equality, non-stigmatisation and flexibility in design. CPRD defines Universal Design as: ’the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.’ In short, Universal Design is diversity driven design.
As noted above, the outlook for ending the exclusion of persons with disabilities from our communities in current lifetimes has been bleak. However, along with the unspeakable human tragedy and loss brought by Covid-19, the virus causing it carries potential for positive change.
The sudden universal realisation of the importance of access to the community, combined with the innovative surge prompted by crisis, may open a window for change. Add the harsh realisation that when society is built on a too narrow base, it easily becomes unstable when people all of a sudden find themselves outside of the norm. Altogether, this could well produce the force needed to propel us towards an inclusive society.
Currently subject to exclusion, persons with disabilities are among those who stand to benefit the most from a development towards inclusion. However, the experience of disability – having one’s requirements fall outside of those facilitated by society – is also a source of knowledge relevant to all.
Who can help us understand what life is like in – or even outside – the margins? Well, for instance people with experiences of being outliers, edge cases, and extremes, e.g. in terms of age, sexual orientation, gender identity, citizenship, cultural background or functioning. As it turns out, the margins can be a terrific source of inspiration and innovation.
This is utilised in Universal Design, and means working in close collaboration with a diversity of users in all stages of a design process in order to understand and implement the qualities that make design sustainable over long periods of time and for a wide variety of users and use cases. This, in turn, creates a community flexible enough to roll with the punches, allowing for a variety of avenues to do, and be, those valuable aspects of life we protect as human rights.
As a response to Covid-19, we now do many things differently. One example is how we interact professionally on-line in new ways, even for coffee breaks. Taking in a concert from home, as it is now available via a link. Staff close to older persons facilitating contact with family members on-line.
Organising access to the workplace in shifts, noting the particular requirements of for example different age-groups. Accommodating for working parents who now have children in the background during working hours, or have to pause a meeting as a sudden conflict among the children erupts that requires solving. It is amazing how quickly we adapt, and the ingenuity, flexibility and acceptance born out of necessity.
With this manifestation of changed practices, our attitudes change. Under the radar, the normate template (what the ‘normal’ person is, does and requires) is under scrutiny and is being challenged. The centre and the margins are shifting, and what previously was understood as a stigmatised position and a marginalised use case (social distancing) is now the new normal, i.e. the new situation to accommodate. And so the solutions become normal, and with it the need for solutions become destigmatised. When the social solution appears, the underlying requirements (the reason we need the solution) is no longer categorised and problematised as difference, vulnerability, or impairment.
The challenge ahead is to destigmatise diversity. And not just the particular responses that are no longer seen as catering to diversity, as these are suddenly needed and expected by all. Let the current disappearing stigma attached to practices outside of the box continue to disappear, and become a general approach rather than just a softening around the new practices now becoming the norm.
Where to now?
Forward-looking attempts to draw lessons from Covid-19 does not diminish the unspeakable human tragedy, loss and hardship now facing humankind. Even while looking for potential to end the social exclusion of persons with disabilities, the same group is disproportionately exposed to the current dangers.
First and foremost, discriminatory attitudes about the value of persons with disabilities and their lives manifest themselves in triage guidelines, and guidelines for whom to prioritise when medical care is scarce.
This discrimination is rampant and it costs lives, which is further exacerbated by the fact that underlying health conditions, partly overlapping with impairment, is one of the main risk factors for Covid-19 resulting in serious illness and death. Another manifestation of discriminatory attitudes is the way this risk factor is routinely approached with relief, as a reason to down play the threat of Covid-19.
Current responses to Covid-19 create many new barriers for persons with disabilities: Information is not routinely produced in accessible formats, interpreters and personal assistants are not often enough categorised as ‘essential’ workers allowed to break curfew, sanitising in institutions is often not prioritised and neither are guidelines and protective clothing for personal assistants.
Crucial services are cut down, ranging from food and medical care to schools pulling back on ‘special’ supports as a first response to staff shortage. On top of this, social distancing is impossible for a person who requires assistance with e.g. eating and clothing, not to mention in residential institutions. The list goes on.
Covid-19 exposes our failure to implement the CRPD, with consequences now more than ever resulting in death where there could have been life.
This exposes just how far away we are from a systematic readiness to respond to, or even think of, the requirements of all when faced with a crisis. Instead, what was already bad turns disastrous and our responses actually exacerbate rather than alleviate human suffering and loss of life.
And ahead lies the socioeconomic consequences of Covid-19 which will hit those in insecure, low paid employment worst, not to mention those who (often as a consequence of inaccessibility of education and the labour market as well as prejudice) are not enabled to make their living like others.
On the same note, current positive developments in terms of alternative inclusive practices remain tainted by the fact that social exclusion (now ‘social distancing’) was not addressed when it was ‘just’ a problem for persons with disabilities. So the hope and joy connected to seeing the sudden surge of solutions is bittersweet. As long as the tragedy of lost opportunities were confined to persons with disabilities, the sense of urgency was not there.
Still, we must push through this, and catch any wind going to move towards more inclusive, more resilient societies. Of course, this is a question for governments, as the guarantors of human rights. It is a matter of legislation, public education, policy making and budgeting.
Further, it is also up to all of us, each one of us; in our personal as well as professional capacity, as part of this restructuring and recreation of life in the wake of Covid-19. We all have to be involved.
We may not all be experts in Universal Design, but we do have a part to play in making all services, infrastructure and practices useable for all, including persons with disabilities, as part of a diversity of human beings all rightfully expecting to live our lives. The design process needs to include persons with different abilities and ways of functioning; co-creation is key to Universal Design as well as to human rights.
Society (we) routinely create inequalities.
Some we notice, some we don’t, and some we don’t want to notice. When we do things differently now, when we create new solutions in our lives and at our workplaces, we must ask ourselves: What situations or lifestyles will this solution make life harder or easier for?
Who can benefit from this new practice, that was previously excluded? How can practices be made more inclusive? What underlying assumptions and categorisations are we relying on and how will these contribute to the disablement of people? Who are we not currently imagining as potential users of what we are designing? Which human rights are affected?
Those are precisely the type of questions Universal Design is meant to deal with. The first step is to suck in and recognise the real-life diversity of needs; information, experience and expertise is often just a google away. Fashioning inclusive solutions demands awareness, decisiveness and common sense. Asking yourself “Who are we not (currently) designing for?” opens up vistas that can’t be spotted as long as we are stubbornly insisting of the priority of an imagined ‘normal’ user.
A keen nose for potentials and design openings also helps. There are at least five patterns – or focus points – that support the shift from segregating modes of operating towards diversity driven development based on Universal Design:
- A shift from problem-oriented, reactive efforts when needed, tightly connected with persons with disabilities, towards a proactive stance fulfilling the prerequisites for equal access and usability from the start, utilizing the positive stance of Universal Design and insisting on maintaining all as target group.
- A shift from checklist-based assessments of the end result, resulting in a focus on late stages, towards highlighting and applying pressure and clearly formulated demands regarding Universal Design on suppliers and entrepreneurs already in early phases of development processes.
- A shift from working on different aspects of equality in ‘silos’ towards integrated, intersectional work on equality moving beyond and between and combining separate fields.
- A shift from user reviews in late stages as separate, one-off activities towards user influenced co-creation as part of established, ordinary work practices.
- A shift from counting efforts related to accessibility separately as something ‘extra’, towards highlighting the economic sustainability of doing the right thing from the start.
Creating new barriers rather than new opportunities at this time of enforced change would truly add to the current tragedy. Necessity is the mother of invention. Even if the necessity of change remained invisible until the problem of social distancing affected the majority population, let us go forward in a truly inclusive manner. Forward, towards a societal development understanding and cherishing human diversity as an untapped resource, previously concealed by the imagined ‘normal’ person. Let us utilise Universal Design as a proactive strategy capable of propelling communities towards a sustainable, cohesive state of togetherness and resiliency. Not resilient to change, but resilient when changing.
Anna Bruce, Senior researcher in human rights law at the Raoul Wallenberg Institute of Human Rights
Per-Olof Hedvall, Associate professor in Rehabilitation Engineering and Design, Director of Research at Certec, Faculty of Engineering LTH at Lund University
Illustration: Johanna Rydeman, Certec LTH