Introduction
Disability can be seen as a one-dimensional experience. For example, my reliance on Canadian crutches for mobility might suggest that I have certain accessibility needs, and if they are satisfied then the impact of my disability has been mitigated.
I was prompted to write on this theme a few days ago. I got up from my chair with just one crutch, which is normal at home, and made to walk to the kitchen and almost fell. My left foot dragged on the carpet and that was enough to throw my balance off. I was lucky this time. I managed to grab the bookcase in time.
I try to limit myself to 2 falls a year. I have one left for 2022. I fall for the same reason every time. I am not paying attention. Every step I take must be intentional and conscious. I have a great sense of balance, but almost no ability to prevent a fall beyond a certain point. I have fallen when I have been using 2 sticks several times.
When I walk, I need to be constantly aware of where my feet are, and how they are moving. My ankles don’t flex normally and if I don’t lift my feet, they can drag. It doesn’t take much to throw me off balance and avoiding that takes constant additional cognitive effort.
The need for constant additional cognitive and emotional effort takes its toll over a day if I am travelling. That can impact my mood and enthusiasm. I am comparatively lucky in that things are way better when I am sitting down. When I was commuting, getting to and from work was demanding, draining and sometimes dangerous.
I remember when I could stand up and walk with no care. Now, I have that only experience in my dreams. When I wake up into my reality there is always a sense of sadness, a sense of burden in knowing what’s ahead.
Expectations of heroic conduct
In July 2010 I attended the inaugural meeting of what was then NSW Ageing Disability and Home Care’s DEN. Almost nobody then, or thereafter, spoke openly about their own experience of living with disability. A few revealed a personal dimension when they talked about the frustration of encountering discriminatory attitudes or the difficulty in getting accessible technology. We were encouraged to talk about the fact that we lived with disability, and the experience of discrimination, but not the experience of living with disability.
As a result, we had remarkably little understanding of what our colleagues were experiencing. We were not complainers who want sympathy and didn’t want to be seen as such. So, we kept quite in public. In private there was a little sharing, but it was not much, and it was guarded – at least that was my experience.
When I became DEN Chair in 2016 and I started to advocate for members I had conversations that drew out the depth of personal experience to a far greater degree. I spoke with members with a range of disabilities, and it was a humbling experience to come to know the deeper personal side of living with a particular disability.
Without exception the people I spoke with were of good humour, possessed great strength of character, and were compassionate. But there were times when challenge of navigating their world was such that the cognitive and emotional burden was revealed in expressions of exhaustion (physical and emotional), frustration, or pain (physical and emotional). All battled the risk of depression to some degree.
This hidden side of living disability is rarely openly expressed. I think this is a pity, because it fosters an illusion that we are all heroes who do not have an inner life that can be demanding of cognitive and emotional effort, drain our energy, cause stress, and influence our moods.
This is a legacy, I think, of the campaign that made people with disability out to be exceptional. The goal was to show we could do and be more than the soft discrimination of low expectations allowed. The people depicted in the campaign always had a visibly obvious disability. They looked determined and strong. The Paralympics added to this. We saw performance of disability, not living with disability.
How hard can it be?
In the early days of the DEN, we met at the Portside Centre in Sydney. A blind colleague arrived at the meeting one morning in a rage. They had walked maybe 700 metres past several active construction sites and had to cross 4 streets. The noise from the construction sites drowned out the alert sounds at pedestrian crossing that let them know when they would walk. They had no sound clues at all, and they had arrived stressed and distressed. The noise from the building sites was oppressive, and dangerous, depriving at least one person of vital sensory awareness.
The fact that they had persisted and had arrived was impressive. That took guts and fierce determination. But what stayed with me was the flood of emotion – the frustration and anger. I started to understand just how harrowing what was to most other folk a short walk could be. I had taken the same route myself. I had struggled on my sticks to cross streets in time, avoid being jostled by the crowd of commuters streaming to their offices, and keep myself upright on the sloping footpath. I had arrived feeling drained and need of a break and a coffee. But it was minor compared to what I witnessed.
Disability is not just the named thing. It has an experiential atmosphere – how it is lived and how others respond to it. It is the whole experience – most of which is hidden, private.
Extra effort
Sometimes a disability means that significant additional physical effort is required to achieve the same outcomes ‘normal’ folk achieve quickly and with ease. This starts from waking up – getting up, getting ready, and getting to work can be the hardest part of the day. In jobs that are largely sedentary, doing the work can be the easiest bit of the day. And, going home can be just as tough as getting there.
The increased physical effort also has cognitive or emotional consequences.
A few years ago, I spoke with a colleague who had lower arm and leg amputations. He used prostheses. He described a typical morning – from getting up to getting to work, which was daunting to me. Then he casually mentioned that the pain was what he really didn’t like. Although his daily routine was normal to him, it was still demanding. As we spoke it was also clear that it had an emotional impact as well.
It is little wonder that COVID was a blessing for many people with disability. Working from home not only reduced the physical demands of getting to work; it also eased the cognitive and emotional burdens associated with commuting. For some that also reduced risk of injury as well.
Living with disability can be hard work, and a lot of that work is associated with getting around – but by no means all. This doesn’t mean that being isolated is preferrable. It means that having a choice to exert the additional effort, accommodate the cognitive and emotional burdens, and expose oneself to risk of injury is better than having no choice.
How does it feel to…?
This is not a question we dare ask as a rule. We struggle to acknowledge life experiences that are challenging in an open way – unless we know a person closely. By social convention we guess a lot. We compassionately allow that people might be having a tough time when we know what they are going through – usually transient experiences involving grief or stress.
Our culture favours stoic determination and keeping emotions private. Saying what we are experiencing is something we may not even share with those we know intimately. This is not something we can change, or maybe even want to.
But there’s a difference between not asking and assuming that there’s no inner experience that is continually cognitively and emotionally demanding just because the superficial impression is of a simple disability.
The impact of an illusion
These days we speak of the social model of disability. The PWD website has a good definition:
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.
To me this definition risks creating an illusion that there is no existential foundation to disability – just an interactive one. The previously dominant model of disability was the medical one. Here is what the PWD website says:
According to the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to ‘what is normal’ or abnormal. ‘Disability’ is seen ‘to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be.
There’s a lot wrong with the ‘medical model’, but this definition seems to be also politicisedand turned into a loathsome extreme that makes the social model seem like the only good thing.
There may well be a legitimate medical aspect to a person’s disability. And while it is certainly not true that “people with disability are to be pitied” it is true that some disabilities can be the source of existential pain – especially with acquired disabilities that rob a person of being able to do what they once did. I know this very well.
Likewise dismissing the notion that “ disability is all about what a person cannot do and cannot be” seems to me to be missing the point of the idea of disability. Some activities and roles are ruled out – period.
Trying to shoehorn disability into a politically agreeable definition poorly serves people who live with disability. Yes, there’s much about the social model that brings much needed changes, but to assert that disability arises because of an “interaction” with “barriers” reduces the meaning to a simplistic level. And this level is the source of illusions that can generate offensive assumptions.
The comedian, Adam Hills, has a prosthetic foot that doesn’t appear to cause him many problems in terms of barriers to activities. But he did reveal that he makes frequent trips to a physiotherapist because the prosthetic foot throws his back out. Improvements to prosthetic feet may solve this problem. Hills still sees himself as a person with disability. Essentially, if you need a prosthetic foot, you have a disability, even if that prosthesis makes it possible to do nearly everything you can do with a regular foot – wiggling toes is not yet an option.
A disability is a permanent variation from the norm to a degree where an adjustment or accommodation is necessary to ensure equity. It may have a medical foundation. But while adjustments or accommodations may address many issues about equity, there are two persistent features to keep in mind:
- They are not universal or ideal.
- They may mitigate the impact of a disability, but they do not negate the disability itself.
Thanks to the profound misfortune of war, advances in technological responses to physical disability has been extraordinary. But even so those solutions are not necessarily effort, angst, or pain free. Removal of barriers is a good thing – but it’s not the only thing. Somethings can’t be removed.
I want to propose an existential model of disability:
A disability is a permanent variation from the norm to a degree where an adjustment or accommodation is necessary (but not always available) to ensure equity. It is also the experience of living with that permanent variation in whatever way an individual can.
Conclusion
Disability is an experience, not just a thing. That experience often entails additional demands on the individual’s cognitive and emotional resources during normal daily life. If this demand is significant, whether episodic or ongoing, it can constitute a burden of stress that may impact mood and attention at times.
A burden of stress is something we all carry at times – generated by life circumstances. We don’t need that burden added to by avoidable situations. Exclusion, discrimination, and bullying are avoidable if we are kind, inclusive, and respectful to each other.
People with disability are not heroes whose lives may have been transformed because barriers related to their disability have been removed. The experience of the disability remains – and living with it goes on.