So, I got MS. I'm sick now. I am disabled. I am the problem and I should feel grateful for whatever charity or society shows me because it's all about me – the individual. Likewise with people who were born disabled – there is the belief that they are not as they 'should be'. All disabled people should accept the narrative that it is all on us. Any problems we face are our problems, because we became sick or injured or were born ‘wrong’. But what if all of that is just a myth? What if we are not anomalies? What if we are actually a normal part of the very wide spectrum of human diversity? This would make us all 'normal', and the problems we face would not be our individual problems, but human or societal problems.
The dominant narrative of disability
I use the term 'narrative' deliberately because it is essentially just a story. Not some kind of irrefutable reality and certainly not in any way evidence based. The problem is that the dominant narrative is a very pervasive story. We have dominant narratives imposed on us from the moment we learn to communicate (possibly even before this). These are the ‘unwritten rules’ of behaviour, ‘common sense’, what ‘everybody knows’ ... and so on. The truly insidious narratives are so deeply ingrained that people don't even know they are there – we often can't see them to question them. This includes the dominant narrative of disability.
The dominant narrative of disability in our society is the medical model, and it has been dominant for a long time. This model originates with the judgement of doctors or other medical professionals. They are the ones who decide what is normal and what is abnormal within the range of human diversity. Those judged ‘abnormal’ are labelled as ‘disabled’. It is assumed that disability inevitably reduces an individual’s quality of life, and the only way to solve this is through medical intervention. The only goal is to fix or improve the disability so that people can be as normal as possible. This approach makes people responsible for their own disability, as it is situated solely within their own physical bodies.
One side effect of this approach that I have personally experienced is that when medicine couldn’t fix me, people were uncertain of how to treat me. I’m not a normal adult and I can’t be turned into one. I’ve found that people who are often well meaning default to treating me as an ‘eternal child’. As it turns out, I’m not very good at being a child as I’ve been a capable adult for a long time. It’s very frustrating; I want to say things like, ‘Speak to me in baby talk one more time and you’re f - f - f . . . fairly ignorant of my capabilities, but thank you so much for all of your help ?.’ You see, in this narrative we’re not allowed to get angry. We always must fight the good fight to be normal. Always be happy and optimistic and eternally grateful for anything that is done for us, regardless of whether our consultation was sought, or assistance required. We also must be better and achieve more than ‘normals’ to justify our worth as humans.
Developing alternative narratives
Thankfully, it is possible to develop alternative narratives. The issue is that first the dominant narrative needs to be exposed, examined, and then discarded or amended. This is not an easy thing to do – keep in mind that we have been exposed to the same socialisation in the dominant narrative as everyone else. Often we stand in our own way. To combat this, I have a mantra from Michael White on my wall: ‘The person is not the problem, the problem is the problem’. Once we take ourselves as the problem out of the equation, what is left? The problem is the interaction between disability and society as it is informed by the dominant narrative.
This problem is addressed by the social model of disability. This model occurs in diverse forms, but at its essence is the belief that it is normal for humans to be disabled. There have always been disabled people in society and always will be. It isn’t possible for any human to live their entire life without experiencing health issues, unless they die when they are young and healthy. This would be a far greater tragedy than getting MS.
To illustrate this at the simplest level, consider a restaurant at the top of a flight of stairs with no alternative wheelchair access. As an OMS Ambassador, this is a problem that I have encountered when trying to organise Circle meetings. On a wider level, this is a problem that one of our Members of Parliament has to face when he goes to work in Parliament House – he is carried up the stairs. That is how pervasive and acceptable this issue is in my society (things may be different in yours). It is just accepted that the problem is the person who has the mobility issues. If we take the person out of the problem, what is the problem that remains? Clearly it is the building, it should have wheelchair access. The problem extends beyond this though. It is within the education system that trained the architect to design a building that can’t be accessed by the entire population. It is with the local council who issued the permit to build a building with this deficit. It is with the population who elected the council and higher representatives who don’t blink an eye at the lack of access, and therefore segregation, surrounding us every day. The problem is all around us but we (disabled people) are not the problem.
This particular problem clearly needs to be solved retrospectively with current buildings as well as amending building permit requirements. The main arguments that I have seen against these requirements are finances and cultural heritage. Neither of these stand up to scrutiny. In Australia, occupational health and safety requirements overrule both. When somebody who is mobility-impaired has to access a building via stairs, it just isn’t safe. I’ll admit I haven’t researched how our Discrimination Act deals with segregation against a portion of the population in our society, but I’m pretty sure it wouldn’t support it.
When the challenges are laid out like this, it can seem overwhelming and complicated. That isn’t how I intended it and it isn’t how it has affected me. My ability to identify and reject the dominant narrative in my society has actually helped me to retain my identity and self-esteem. We have enough problems. We don’t need to deal with the insidious near invisible problems that are dumped on us every day.
This is my take on the brilliant work of Norm Kunc, Stella Young and Michael White. Please see below for links to their work.