Introduction
Disability is a loss which can be painful, distressing, isolating. It is a loss of function – physical, sensory, or cognitive – for which adjustment, adaptation or accommodation is necessary to ensure inclusion and equity. But what change is needed in the person with the disability?
The social model of disability is a useful contrast to the medical model. But neither model honours, nor even acknowledges, the fact that there is also an existential element – what the person with disability experiences.
This leads to the objectification of the person with disability. This was my experience in hospital. The medical model dominated. Nobody asked me how I was handling the experience of my body becoming utterly useless.
The social model of disability has a lot of merit in driving access and equity in the social landscape, but it is not an absolute stand-alone model. Disability is disability regardless of context. Yes, the social environment can be non-inclusive, and that’s an issue. But the experience of disability is still there, in the body, no matter where we are. My home is not a social environment. Nothing can contradict the fact that I cannot walk unaided no matter how amenable the environment is.
To me efforts to define disability as an environmental issue are well-intentioned but misguided. It is partly true, as is the medical model. But my disability is not mainly a medical problem nor an environmental one. Both are domains of authority and power beyond my experience. They are about me as seen by others. I must have power and authority on my own account.
The existential component
Rather, I suggest a triangle of 3 elements with interlocking merit – medical, social, and existential (personal). All 3 must be employed to create the outcomes envisioned by people with disability and those sympathetic and responsive to their needs.
The existential element is about the experience of living with disability being permitted to be an integrated part of way we think about disability. It requires courage and a sense of safety to speak, and empathy to listen and imagine.
Disability has degrees of impact on one’s lived experience – from a hassle to a catastrophic change. It is not a case of being always normal + a feature (the disability). The feature can radically alter the normal, destroy it in fact.
Life can generate adversities that create changes that we do not describe as disabilities, but which have a similar impact because of stresses or traumas that arise. This is largely a question of language and definitions that belongs to another important discussion. My purpose here is to acknowledge that the existential element is not unique to disability – just that it has been neglected.
Singular or binary conceptions of anything are extreme. When I worked in psychiatric hospitals on the early 1970s the medical model of disability prevailed. The inner life of the patient was unimportant. As we evolved the social model, we rejected the extremes of the medical model. The organisation People With Disability Australia (PWDA -pwd.org.au) says of the social model:
The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.
The necessity to add that the social model does not deny the reality of the disability or the experience of it. But it suggests that here is an issue poorly handled. The existential element must be mentioned but not included. Doing this includes it, but weakly. The experience of the person with disability is reduced to almost a footnote – just part of human diversity.
In any effective system we need 3 elements at least. In this context we need the experience of living with the disability (existential), the fact of the disability (medical), and the environment in which the individual lives (social). If any one is weak or absent, like a 3-legged stool with only 2 good legs, it will become unstable or fall over.
In previous essays I have noted, among managers especially, that empathy is often impaired. There seems to be a link between power and the loss of empathy that is innate in organisations and communities beyond a certain size and level of complexity. On a community level this is why we need organisations like PWDA. We create mechanisms to overcome an empathy and response deficit because we need to do so.
Response to people with disability is most positive and strongest among people who have direct experience of disability – those who have entered the existential domain as experiencers of impairment or as carers or intimates (friends, family members).
I have found that getting around on Canadian crutches triggers responses from people who have injured their legs, had hip or knee replacements or who have close friends or family members who have had similar experiences. What has intrigued, and moved, me is that I also get empathic responses from people who appear to have suffered significantly in their life experiences, but haven’t needed crutches.
The existential is at the foundation
I learned, when I briefly worked with a 9-year-old girl who was blind and deaf in a psychiatric hospital, that the experience of the patient was discounted as unimportant. She was objectified. Care of her body was the only concern. This experience was fundamental to me – to see that in a ‘care system’ there was no recognition of an inner life.
The child was found locked in a shed on an isolated property by electricity service workers who had arrived to advise power was to be cut off for some time. I encountered her in a children’s ward where I had been newly assigned. I was directed to feed her an evening bowl of what looked like thick soup. There was some giggling going on when I was given instructions – tie her into a chair using a sheet and spoon the food into her mouth. Simple.
But she didn’t take to being spoon-fed, so I got rid of the sheet and held her hand while I offered the spoon. She ate it all. I then led her back to her room by the hand and she complied with no struggle. It turned out that the joke was that she was supposed to have sprayed me with food. When I return neither food splattered nor flustered my colleagues were astonished and disappointed.
The next morning, I was summonsed to chief executive of the hospital on a disciplinary charge – inappropriate touching. When asked to give an account of my conduct I described my logic – the child was blind and deaf, so touching was the only mode of communication available. It was strange that this was an issue. On the hospital ward I had bathed young patients and changed their nappies. Condemning a blind and deaf child only to limited compliance-based touch seemed to be cruel. I didn’t last long in thar role. It was no place for empathy.
We begin with the existential. When I was paralysed in the ICU in 2008, I was present in my inert body. I was thinking and feeling, imagining, and fearing, hoping. I was present and engaged.
The medical model ignores the existential unless it impacts its priorities. As the PWDA definition shows, the existential is acknowledged in the social model – but almost as an afterthought, lest we forget completely.
I want you to think about a model of disability as EMS – Existential, Medical & Social. All 3 elements are necessary.
At the very least living with disability is a hassle
I want to begin to explore the existential dimension of living with disability in the rest of this essay and subsequent ones.
My brother, who is a wheelchair user, and a NDIS client, recently reminded me just how frustrating life with disability can be – albeit in a small way. We had sent him some funds for some fine English stout to sip responsibly on his birthday, but he couldn’t get out to buy it. His support worker had COVID. He had his birthday beer a few days later.
Just looking at my family I don’t believe we have a higher proportion of disability than others. Two of the 5 siblings have major mobility disabilities, and I have a nephew with Chronic Fatigue Syndrome, a niece with an intellectual disability, and another niece whose daughter has been diagnosed as being on the Autism spectrum. The testimony from all that it’s a pain in the butt to live with and manage living in the world with disability.
Hale Zukas reportedly said that disability is “a tremendous hassle”. That’s very civil of him. He was a passionate campaigner for accessibility rights. Here’s a link to The Guardian’s article on his passing, in case you missed it in my earlier post – https://www.theguardian.com/society/2023/jan/08/disability-rights-warrior-hale-zukas-life
The trouble is that we who have noticeable disabilities are often assumed to experience no more than we exhibit. But there’s a ‘secret life’ to living with disability we don’t talk about much, if at all.
Its time that ‘secret life’ was acknowledged.
The point
People with a particular disability are not magically experts on all types of disability. The idea of ‘disability awareness’ is great, but impractical without people with disability communicating what it is useful to be aware of – and often their message is non-obvious.
Researchers have found that managers, and maybe colleagues also, are inactive in promoting greater inclusion because they don’t know what to say/ask for fear of giving offence. I guess there are some situations where that’s a real fear. But there’s a trick – build rapport first and create a psychologically safe environment. That may take time and the communication of unmistakeable good intent.
People with disability don’t usually talk about the experience of living with disability because they don’t want to be misunderstood. They are not seeking sympathy. They are not having a whinge. They don’t get asked and they don’t offer. Its an unintentional standoff that serves no good purpose for anyone.
I can’t speak for other people with disability about their experience. I can interview them so they can tell you – which I will do in subsequent essays. I have spoken in depth with (now former) colleagues about what they experience in the course of having to advocate on their behalf. Their personal stories can be heart wrenching at times. All I can say here is that I have been routinely humbled by what I have been told.
Conclusion
Normal people don’t usually have a disconnect between personal experience, medical diagnosis and environmental assessment, and when they do it is transitory. Consider a person with a broken ankle. The medical perspective is valid but does not touch personal experience. The world can become suddenly unaccommodating to a person with a broken ankle. This happened to my stepdaughter recently. And because its is an accident and temporary I check in with her to know how she’s going. I have a personal empathic reason, and an intellectual one.
Living with disability does not excite a similar level of curiosity, because its permanent. It is a strange normal that may be hard to comprehend. A former colleague with an arm and a leg prosthetic told me what it was like to get up and get to work. It wasn’t normal + 2 prosthetics. It was vastly more than that.
Nobody has asked me how I am handling living with disability – not once in 14+ years. My guess is that’s not a question anybody has framed. I am asked how I am going in general terms. The closest specific questioning has come from my GP, but that has been carefully calibrated.
I have asked others this question because, in the course of advocating on their behalf, I have wanted to get a good sense of a situation from their perspective. Even so it is interesting to me that people living with disability generally do not share deeper personal insights about their experience. I think one reason is that we are not used to being open, and that we fear being taken to be complaining or seeking sympathy.
In fact, we have often a lot to complain about, a lot to lament or acknowledge as losses or limitations. We are allowed to grieve, surely. Turning somebody into a disability hero can mean we can just focus on the heroics. This leaves them unable to engage with empathy because they cannot be authentic. I have seen in the eyes of public disability heroes a pain they cannot share through their persona. I wonder if they have become trapped as heroes.
Empathy is not sympathy. Empathy is at the foundation of a good community. It requires a foundation of authenticity. The Social aspect of the disability model is weakened in the absence of the Existential for it is there that empathy and authenticity are to be found.
My hope is that this essay will have shown why the triangle EMS model is needed if true, balanced, disability awareness is to be achieved. In later essays I will explore the spectrum of Existential experiences to help the reader develop a deeper perspective on disability..