by Elena Zeniou
In the landscape of Covid19, we are discovering a world that is not fit for our needs. How we socialise, travel, work, celebrate, grieve - all require extra layers of planning and thinking about uncomfortable questions.
Do we hug when we meet? Do we shake hands? Will you be offended if we don’t? Or if we do? How do I travel safely? How often do I change masks? Will my job understand that I’m finding this really tough? Will they make adjustments? Do I ask the person next to me to put their mask on? Would they be offended? Do I just avoid seeing people altogether?
Consider the above questions, and perhaps add to the list what comes to mind right now. Do you plan for these questions because you should have been immune to the virus but you aren’t? Or would you say that because of the virus our world set-up no longer allows for us to be safe, comfortable,and able to do things as in non-pandemic times? We’ve designed a world that allows us to be functional without a pandemic on the loose. Whereas before we would be free and able to navigate through our social interactions and daily activities, we are now limited, needing adjustments.
Now consider the following; during pre-Covid times, a person with sight loss is preparing for a job interview. As they are getting ready, they plan what they might want to say about the job, and also start to think about how to prepare in relation to their sight loss.
Do I tell them in advance what would help me? How would they see me if I did? If I take my seeing cane will it make me seem less capable, and in need? Maybe I won’t. Do we shake hands when we meet? What if they have their hand out to shake my hand and I don’t see it? Would they be offended? Should I take my seeing eye-cane just in case? What if they see me as less able? What if I do something offensive without realising? How do I travel safely? Will the job understand if I find things tough? Will they make adjustments? Do I just avoid going altogether?
The above thought processes have some similarity, although they are referring to two different situations. In the case of Covid, the limitations, barriers and extra consideration happen because of a world that is set up in such a way that people and a pandemic cannot comfortably and safely coexist. In the case of the person with sight loss, would you say that this is a disabled person that is limited by their vision? Could it instead be that the person with sight loss and the current world setup cannot coexist to offer a safe and comfortable experience of life?
Broken people or broken worlds?
If we consider the above examples, and take the approach that the difficulties one is facing are relating to them as an individual as opposed to barriers posed by the systems around them, this will determine where we expect to see change. If we assume there is a problem within the person, that they are impaired, broken, we will focus on fixing them or - what happens more often - expect them to find their own way to deal with the current set-up. In their paper on human rights and disability (The International Context), Rioux and Carbert (2003) explain the high prevalence in views of disability as a ‘matter of deviance, deficiency, or disease - the pathology of an individual's failure, or a family’s failure to attain standards of normalcy’. This sets the scene for how many go on to experience the world, being seen as faulty - both pre and during Covid times. If we go on to adopt the viewpoint that disabilities exist within the person and not the world, we won’t consider the systems that could enable them to be more able and thrive.
In the case of Covid, if the option for food is to go to a supermarket where no-one wears masks, people are coughing all throughout narrow corridors, no screens at the tills, and no control to minimise the amount of people in the store, this would probably mean that you would feel unable to go to the supermarket. If the supermarket makes adjustments to minimise the risk of virus transmission, you will suddenly feel more able to go food shopping. Your experience of the supermarket can be abling or disabling, based on how the world of the supermarket is designed. Therefore at a time where things are experienced as uncomfortable, unsafe, disabling, there is a lot of power in our collective constructions of the world that can allow for the difference between having a fit for purpose or disabling world.
Would you prefer to go to a supermarket where people are wearing masks? would you prefer to live in a world where you would feel understood if you decided not to shake someone’s hand? would you prefer for the person with sight-loss to feel comfortable sharing with their prospective employer about their vision? or for them to feel understood if they didn’t shake someone’s hand because they genuinely didn't see it?
In Dossas’ book on ‘Racialised Bodies, Disabling Worlds’, Mehran, a Muslim female social worker of Ugandan origin, residing in Canada and living with Polio, says ’The community should accept the fact that I am different but I am also a person like everyone else’ (Dossa, 2019, p. 41). Whilst our circumstances as individuals will always be different from one person to another, we also have a lot of similarities. At present, we all experience a disabling world due to the pandemic. Although this experience will vary from one person to another because of our circumstances, most people have seen what it is like to experience a world that is not designed to make us feel safe, comfortable, welcome, or able.
Disabled people vs disabling worlds can be further explored through understanding the models of disability.
‘Health is the golden crown placed on the brow of the healthy that only the sick can see’ - Egyptian proverb.
When we come across barriers in disabling worlds, these can be very obvious to the person experiencing them. It is very obvious to me when I arrive at a new location (a community centre or health service), holding my seeing cane, that people welcome me as a client - not a professional - until I make it known I am there for work. My identity as a disabled person precedes that of my profession. The assumptions people make and how this influences my experience of life is quite clear to me. However, thinking about the Egyptian proverb, I can understand why this viewpoint is not clear to someone who is not seen as having an impairment day in and day out. Having said that, with all the things I can’t see I feel I have gained some extra vision when understanding what it’s like to face barriers. When I hear people speaking about the challenges of navigating through social, physical and mental barriers they confront during the pandemic, I get it. I see the crown, so to speak - not only because I am also trying to figure out how to survive this myself, but also because of having years of training trying to figure out how to do things because of living in a disabling world. When I listen to people’s experiences of disabling worlds, the opportunities they miss out on because of systemic discrimination or the emotional exhaustion that they face, I understand. Even when our circumstances and experiences are different, I know what it might mean to others to go through a disabling world. It might not be a crown, it might be a scarf or a hat, but I can see it.
Starting from a place of understanding
So what can the pandemic teach us about disabling worlds? As we move to the next normal, I hope we can hold on to these reflections about our experiences; what was it like for you to be in an (albeit transient) disabling world? How is that similar or different to the person in front of you? Starting from a place of understanding, we can consider a world that is fit for purpose for all of us, always. Perhaps the next normal could be a place where we look for what we have in common to better understand one another, and explore our differences to make things better for each other.
Dossa, P. (2009). Racialized Bodies, Disabling Worlds: Storied Lives of Immigrant Muslim Women. Toronto; Buffalo; London: University of Toronto Press.
Rioux, M. & Carbert, A. (2003). Human Rights and Disability: The International Context. Journal On Developmental Disabilities, 10(2). Retrieved from https://oadd.org/wp-content/uploads/2016/12/rioux.pdf
3/10/2020 08:15:01 pm
I think reading this piece has changed my view of the world. I regard myself as an ally of disabled people, and as an ally of the author, who is one of the most able, and also one of the most consistently decent people I have worked with. That said, I think there is a lot to the quoted proverb - privilege is so much harder to appreciate when we have it than when we don't. That's why we have to seek opportunities to platform people who are disabled, stigmatised, racialised and systematically excluded, to stop talking so they have space to speak, and to listen when they talk. We can be humble about what we might not see, or recognise as a problem, even if we know that we are well-intentioned and seeking to be better. And we can take the greater understanding that we gain, carry it with us, reflect on it, and try to apply it everywhere we go because it is a rare moment when we look around us, and inside ourselves, and find that power and privilege are equally distributed. The winds of change are a gale at the moment - let's work together to make sure they blow us somewhere better.
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