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Introduction

Following on from Part 1 I will begin with a journey through what my some of disability pains in the butt are.

As a consequence of acquiring GBS in April 2008 I have residual disabilities in my ankles and my hands. These have impacted my life in substantial ways.

Pain in the butt #1

I can flex my ankles well enough to drive, but not enough to stand and refine my balance unaided. I have a ‘Pringles’ balance – once I start falling, I can’t stop. I get around with Canadian crutches. Rather than being a biped I am like a chair (with 4 legs) or, in safe places, a stool (with 3 legs). I used to have a wheely walker but commuting with that thing on a train was a serious pain. I could ride only in the entrance area to carriages and had to sit on the walker for 90 minutes, away from heating or cooling. With the crutches I could get inside and get a seat – and get warm or cool.

My ankle malfunctions extend to making it necessary for me to lift my feet to avoiding them drooping, catching my toe, dragging, and stumbling off balance into a fall. This makes walking a deliberate and conscious affair. I look up at my peril and I also lose awareness of my walking at my peril. Walking is an intentional and conscious business that mostly involves watching where I walk, ensuring I lift my feet, and bring careful where I put my crutches. On a windy day at Echo Point a few years ago I inattentively placed my crutch foot on a small piece of a branch. It rolled, the crutch slipped, I lost my balance and fell.

Turning around is slow and inelegant. I am beyond the careless days of a smooth U-turn. Its 4-point turn mostly now – slow and deliberate.

I am slow at walking. I recently estimated by walking speed as 1 kilometre an hour. I used to walk at around 6.5 kph. I am, consequently, no fun to walk with. I have found well-intentioned companions almost fall asleep at that speed. I walk alone out of kindness. I have learned to divide my attention between watching where I put my feet and listening to audiobooks. I get through a lot of audiobooks.

The weird thing is that my ability to walk depends upon my shoulders, arms, wrists, and hands being operational. There have been a few times when pain in my wrists has discouraged me from walking out of concern that I might exacerbate a emergent condition.

Pain in the butt #2

One deficit in my stay in the rehab ward was getting an occupational therapist to work on my hands, which were contracting and locking up. We were able to save a decent amount of dexterity, but the only fingers I can straighten are my index fingers, and one of those doesn’t work well. Of my thumbs, I can press with the left, but can’t arch it back, and the right arches back but won’t press. 

My grip strength is poor to boot. There are combinations of shapes, textures, and weights I can’t handle. They would be no hassle to a person with unimpaired grip and dexterity.

Handwriting is not in vogue these days, which is a mercy because it’s a slow laborious process for me now. Thank god for Notes on my iPhone.

Pain in the butt #3

The combination of the first two results in a draining effect when I travel. I am okay driving in the country. I don’t like city driving because of the cognitive demand I feel needed to ensure my reflexes can meet contingencies. City driving is stressful as it is. It’s somewhat more so for me.

Travelling by train is okay when I am sitting down. Around Sydney there are hazards getting up while the train is moving – either to get off or get on and find a seat. Getting on and off trains requires the use of ramps, which are always perilous affairs. The ramps are of a certain size and the difference between the height of the train and the platform varies.

Away from trains I have the challenges of unfamiliar walking surfaces. It still feels strange to walk through an unfamiliar area and not look around, unless I stop. I must watch my feet

The overall impact of travelling is an added cognitive demand to stay safe which renders the experience draining and unpleasant. It’s an exercise in almost constant risk management. As a result I don’t enjoy travelling at all now.

I have fallen only twice while travelling. I wasn’t badly hurt either time – though my dignity was badly bruised. I need help to get back on my feet these days. 

Pain in the butt #4

Overnight travel is nightmarish at times. Accessible rooms aren’t. I have found only one that lives up to that name – at the Shearing Shed motel in Dubbo. It’s the only room where I felt safe having a shower without having to ask for any additional equipment. 

Many accommodation providers make reasonable efforts but fall short of their intent because they just guess what accessibility means. Sometimes the guess extends only to a randomly placed handrail on a wall beside the toilet – placed too high, too low, or too far away. Such placements may be ideal for those whose dimensions (height and reach) match the placement of the handrail, but they are few. There’s a place in Canberra that has a sign on a towel rail warning it is not handrail. The actual handrail is placed exactly beside the toilet and offers no help at all. The sign speaks volumes about the mindset of the operators. And, yes, I did tell them. A year later nothing had changed.

I have been in rooms asserted to be accessible where there has been a hob at the shower entrance, no handrail in the shower. The risk with showers is that you never know how slippery the tiles are. They may be safe for people of normal posture, but the moment you make a lateral movement anything can happen.

I often must ask for a chair in the bathroom in the event the shower is accessible, which is rare. But it’s rare such a chair available. Mostly washing is a perilous process of washing with one hand while standing at the basin, propped up by the other hand – and nervous as hell that the floor might get slippery if it gets wet.

An accessible room should be designed in conjunction with an accessibility consultant. Neither government nor the industry has any interest in establishing a standard by which assertions of ‘accessibility’ should be measured.

Pain in the butt #5

Accessible toilets. I need the hand grips that are in the full-on accessible toilets and in the ambulatory cubicles. And here there are common problems.

Accessible toilets are frequently used by people who lack toileting skills, rendering them unusable when they leave. They are also frequently used by people who have no need of the accessibility functions. So, they are often either occupied or unusable.

Most modern buildings have a single ambulatory cubicle that is almost inevitably occupied by a person on a long break checking their Facebook, or some such.

I get the need to go when you must, and an accessible facility may be the only one available. But, please, check Facebook later.

On the road most accessible toilets are properly designed and are mostly usable. But now and then I come across unaccountably dopey set ups. There’s a town in NSW’s Central West with a newly constructed accessible toilet, but the pan was around a metre out from the wall and way too far away for the handrail to be of any use. The door jammed in the frame and had no handle on the inside. I got out with difficulty, but I didn’t dare sit down.

Pain in the butt #6

All the things I can’t do now are a pain in the butt because I now have to pay for what I could once do. 

• I used to garden and do home handyman/maintenance things. No longer.
• I can’t move furniture.
• I can’t carry anything that requires 2 hands and walking.

Pain in the butt #7

I can’t maintain my love of photography as I used to because I now need to sit or lean. Now I practice ‘seat of my pants photography’ with my iPhone. That’s satisfying but now and then it drives me nuts that there are somethings I can’t photograph as desired. If I can’t park or sit in the right spot the thing I see and want to shoot lurks frustratingly out of my capacity.

Pain in the butt #8

I love reading. Before GBS I was spending $1,500 or so a year on books. Now my grip disability makes handling books a struggle and the act of reading a chore. Mercifully I have access to ebooks and audiobooks. I can still cater to my love of books, but I have lost that sensuous connection with the book itself. Ardent readers will know what I mean. The upside is that ebooks and audiobooks are way cheaper – which is good, because what I save on books can go towards paying for the services I can no longer perform.

Can there be an upside?

Don’t get me wrong. I don’t want to insist there can be no upside, and it’s all a sense of loss. The loss is real, and it is seriously a pain in the butt – across every dimension. It is serious loss too, and it can be injurious on a personal (psychological, relational) and financial level.

The upside for me is, in a sense, about character building. When you have a lot taken away you can’t cry endlessly over what has gone. You must reposition yourself. A lot of this is evident in public disability heroes, especially those who have made a name in sports.

I have to admit I am a better person now than I might have been, had I not acquired GBS. Now this is a delicate matter, and I do not want to suggest this should be true for everyone who lives with disability. This is just my personal perspective.

I am not here speaking for the disability sporting heroes – or anybody. I see disability heroes justly celebrating what they have achieved. But is it an upside or a compensation? Studies in trauma suggest that heroics can be a way of coping with unprocessed trauma. I don’t presume to know how any other individual comprehends their situation, challenges, and achievements. They must speak for themselves.

Conclusion

Disability is, as the name suggests, a loss. How we handle our losses is a personal affair. The net consequence is usually a loss, even if some gains are made. In calling those gains ‘upsides’ I am acknowledging that, depending on one’s values and philosophical orientation, there are opportunities to benefit as we respond to disability. But will those gains off-set the loss and lead to a net benefit? Probably not for the majority of us.

A few years ago, I asked myself whether, if I had access to a time machine, I would go back in time and not get on that train on that morning I became ill, and that illness morphed into GBS. I decided I would not. But that was an imagination game, and I cannot assure you, were it a real prospect, I would actually refuse.

What my imagined decision not to go back told me was that I had a strong sense of personal growth. I was forced to confront elements of self as I recovered and adapted. It would be an utter waste of a personal catastrophe not to grow personally. 

That does not mean I miss what has gone. When I am in bed I am ‘normal’. When I wake up and get up the abnormal returns. I think this true for acquired disability, especially of a radical nature. We have a memory of what it was like before, and that will not be eradicated.

A few days ago, I was at Wentworth Falls lake for an early morning walk. I watched a woman walk by with an unusually elegant and fluid gait, and thought, “Gee, I used to do that.” Then I was off, slowly, eyes scanning where might next footfall would be. I walk there because there is an accessible concrete path, and places to sit so I can enjoy looking around and being there.

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..

Introduction

This essay has been prompted by a confluence of 3 events. The first was a zoom hook up with my 4 siblings. Four of us have our birthdays in the span of ten days. We got talking about the support they gave me when I contracted GBS in 2008. I have little conscious recall of their involvement and, until that call, no appreciation of their experience.

Another event was falling into a bath a few days ago and being utterly unable to get out. I was lucky I had my phone with me and was able to call an ambulance. Mercifully I was fully clothed – that saved some dignity. It took maybe 20 minutes for help to arrive, and I had time to recall lying in a shallow bath in ICU in 2008 abandoned and forgotten. The bath was intended to be therapeutic. I was still paralysed. Because of my height my ankles were resting on the thin metal frame of the bath which was like a child’s paddling pool. There had been an alarm demanding all hands attend a crisis elsewhere in the ICU instantly. Suddenly there was nobody there. I have no idea how long I was left. The water had gone cold and the pain in my ankles was intense and I could not move my legs. 

The final event was starting to listen to Bessel Van Der Kolk’s The Body Keeps the Score. This is an excellent book on post traumatic stress. I am at a part where the author is describing a woman’s response to a horrific motor vehicle accident. She expressed no emotion in describing it. That was my experience when I collapsed with a sudden onset of GBS symptoms. I found myself lying on the loungeroom floor unable to move. I still have no coherent emotion about that experience.

In the ten months I was in hospital (3 in ICU and 7 in rehab) there was no concern ever expressed about my psychological wellbeing. Being suddenly paralysed was seen as a medical problem, not an experiential one. Worse, for me, I was flagged as not worth the effort and there were steps taken to ship me off to a nursing home. My family, bless them, fiercely repudiated that proposition. A year later I was back at work fulltime.

This essay is written for all who acquire a serious disability, and those who work with them.

We under-estimate trauma

I can now see several trauma points in my experience – suddenly collapsing with paralysis on my loungeroom floor; waking up with a tube in my throat and another up my nose (I wasn’t able to speak or eat); being abandoned in the course of being given a therapeutic bath; being written off as a hopeless case to be consigned to a nursing home (I had to fight to be taken to physiotherapy – at first I couldn’t get there myself).

At no stage in my 10 months stay in hospital was I offered any psychological support. The staff in the ICU were mostly caring and compassionate, but how I was handling what was happening was never raised. In a way that’s fair enough. An ICU is about keeping you alive – if that’s possible. The day I left I was given a standing ovation by the staff. Not a lot of folks leave the ICU with a pulse. The fact that I did was down to a team effort. They were acknowledging my effort. I was not able, at that time, to acknowledge theirs.

Looking back, I still think that psychological care is part of the rehabilitation process. I get that resources are thinly stretched, but I was not even advised to seek counselling. In fact, the local social worker, who was part of the effort to pack me off to a nursing home routinely refused my requests to meet on the grounds that she had no time. I got to see a social worker only when she was on leave. Psychological support was not part of the service.

I recognise, many years later, that I was traumatised by what I went through. I am working through that now. In the process I have come to understand just how traumatic the acquisition of a disability can be. I look back over my time as Chair of the DCJ DEN and I can see, in retrospect, the manifestations of trauma in the lives of many of my former colleagues who were DEN members.

Trauma makes you tough, but maybe also hard

In the absence of sensitive support, acquiring a disability demands intense personal fortitude. You can put up with, or take, a lot of adversity. But it can also make you seem vulnerable or even weak in terms of what is normal. You can become a target of people, usually in positions of power, who prey on perceptions of weakness – not understanding that experience of disability builds inner strength. This can set up a contest between predatory bullies and tough victims. This is a new insight for me. I wish I could share with the reader a handful of stories where the ‘victim’ triumphs. But even tough victims know when they are on a hiding to nothing – and its time to move on.

However, moving on is not always an option. Sometimes there is little alternative to staying put. That means being subject to conduct that induces trauma.  We are social beings and being subject to bullying – being denied inclusion and acceptance because of one’s perceived vulnerabilities – is a traumatic experience at a deep level.

The othering of people with disability

In my last post I proposed that we might re-envision disability in the context of an exploitable vulnerability. There is sound anthropological evidence that even way back our hunter gatherer ancestors cared for their community members who had acquired a disability.

We should not marvel that we do, rather that we do not. We have a choice to widen our sense of ‘us’ to include those who are not ‘like us’. Indeed, our ancestors were far more inclusive among their own than we are. The instinctive impulses of what we might now call tribalism may have discouraged inclusivity beyond one’s own group, but now we have made that distinction between levels within what should be our own.

Wars cause trauma to body and mind in those who have served on our behalf. Soldiers from the first and second world wars have returned from service with disabilities (I worked in Veterans Affairs 3.5 years, and I am only working this out now) – and issues of accessibility are still being addressed. Previously the inaccessibility of the ‘normal’ world wasn’t a concern for the injured and the maimed whose unsightly breech of the ideal norm rendered them unfit to participate. We did not honour those who served by making what they had defended more accessible to them. Our response to accessibility is rights-based, not duty-based.

The trauma of war and war-related physical and sensory disability has been folded into cultural myth of the norm – what is the tyranny of ‘ablism’ (the ideal is triumphant and the damaged humbled and rendered invisible).

Thank you, war vets, for PTSD

It has been the efforts of psychologists caring for war veterans who have broken through the myth of the ideal to find an idea of trauma we can all share.

I worked in Veterans Affairs in the late 1970s. Psychological disabilities were recognised under multiple terms, including ‘insufficient personality’ – code for ‘not man enough’ to handle being torpedoed twice and ending up in the water with bits of your shipmates in shark infested waters and come back smiling.  

Work with psychologically distressed veterans has come a long way in the last few decades.  It has led to deeper, more nuanced, idea of trauma. We now understand that trauma – from post-traumatic stress (drop the ‘disorder’ now) concerns us all.

Conclusion

Unless you have a particular interest in trauma you may still think that PTS(D) means only life-threatening experience. it is certainly true that physical life-threatening experiences can induce trauma.

But now we also recognise that experiences that threaten our psychological/existential being are also traumatic, and this trauma can infest our bodies and minds in insidious and destructive ways. This is new stuff. 

Acquiring a disability can be traumatic, so can its treatment, and so can the process of adaptation and adjustment – including exclusion and bullying.

The surface perception of a heroic smiling person in a wheelchair can numb us to the struggle. I love the Special Olympics, and I am awe of the performances of many of the athletes. But the surface gloss often conceals a foundation of trauma.

As I learned from my own experience, acquiring a disability can be traumatic without really understanding what that means. For those who work with people with disability, please appreciate that there’s a depth to the person’s expression of their personality and character they may not want to express, or, if they do, feel comfortable and safe in doing so.

Trauma impacts many people and I do not intend to assert that people with disability are a special case. This is just the focus of my work.  Please do read current work on trauma to ensure your understanding is up to date.

As well as The Body Keeps the Score, I suggest The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture and In the Realm of Hungry Ghosts: Close Encounters with Addiction for starters. As usual I show the Amazon link because it has hardcopy, ebook and audiobook options, but do please support your local book shop if you prefer hardcopy.

Introduction

We must periodically review what we think we know about Disability and Inclusion to avoid becoming stuck in habits of thought that narrow our vision and restrict our depth of perception. In fact, apply this to anything. We all need a refresh, no matter what field we are in. 

That said, when we feel burdened by demands such a refresh is not a popular option and I could be seen as one of those annoying people who blithely expects others to do more and more with less and less time and attention – two deeply valuable assets. 

I confess this is a risk, but it would be disingenuous of me to suggest there is an easy pain-free alternative. 

In this essay I ask only that you read it and take away one thought to chew on. 

The idea of neurodiversity and the Bell Curve.

My favourite inclusion podcast – Leading with Empathy & Allyship – is a constant source of inspiration. The Power Of Neurodiversity In The Workplace          With Tim Goldstein,broadcast on 23 Feb 2022, got me thinking.

Goldstein was making an important point. The term neurodivergent, in popular use, was often taken to imply something was amiss. We ‘diverge’ from a true or accept path. But he notes, we are all different. Its just that maybe 70% of us, who form the majority, might be considered to be neurotypical. That doesn’t mean ‘ordinary’ or uninteresting. All it means is that there is a spectrum, and the majority creates a ‘normality’. The minority adds to that ‘normal’ to fill in the range [spectrum] of being human. We are all diverse expressions of being human. Some of us may be a long way from being normal or typical, but we do not diverge from being human.

The Bell Curve is one of the most useful ideas to play with. Simply put, many things about being human can be mapped to a standard geometric curve which has a middle [normal/numerically dominant] and extremes [often expressed in negative or positive terms unfortunately] inhabited by a minority. The extremes are taken to polarities. The one we may be most familiar with concerns intellectual ability. At one extreme we have intellectual disability and at the other we have genius.

You can apply the Bell Curve to just about any human attribute as a useful guide to understanding that a diverse spectrum of human attributes is the norm. We can apply multiple Bell Curves to multiple attributes, and we are at different places on the curve for each attribute, normally. There are, no doubt, a few people who are extreme expressions for all measured attributes – at either extremity.

Neurodiversity is a shorthand way of saying we think differently, and some people do so in ways that extremely different from the majority. But we could also talk in terms of [pick your attribute]diversity. It is here we need to avoid a trap we unconsciously fall into. Diversity isn’t a merit scale. But we assume it is. It’s a scale of difference while retaining an overall similarity.

To DIE for

Normally proponents of Diversity, Equity and Inclusion [DEI] don’t have a philosophical reason for arranging the letters of the acronym in any particular way, except to avoid having them read DIE, and IDE isn’t attractive – neither is EID.

I want to argue that D+I=E makes better sense. Here D is the spectrum of being human, regardless of what attribute/s we focus on; I is embracing that Diversity; and E is how embracing that Diversity is expressed.

The acronym doesn’t work, but the formula does.

Disability and Diversity

Many of us will have our expression of some human attribute impaired or impeded in some manner, whether temporarily or permanently – and it may not matter most of the time. Being tone deaf may rule you out of some few activities or roles, but not the many others. 

The word disability is very useful to convey an important idea, but we use it selectively, and often adversely, to mean more than it needs to mean. It should be specific to a circumstance where an impaired expression of a human attribute leads to unfair disadvantage and exclusion.

Here I am not referring to social model of disability, but the idea itself. There are a few human attributes in relation to which we are instinctively discriminatory. Physical/sexual attractiveness is perhaps the most potent. But disability may also trigger unconscious adverse reaction in some people.

Depending on our psychological health [especially trauma related conduct] and our social conditioning, or status, we may also exclude or bully people who we see as vulnerable or weak.

People whose physical appearance or behaviour may signal they are vulnerable or weak may be people with disability. There is one area in which this is sadly very evident. The 2021 NSW State of Sector Report [the 2022 Report is late for some reason] published by the NSW Public Service Commission reports “Rates of self-reported experienced bullying, by different employee groups” on page 47. Staff with disability show a rate higher than 24%. Aboriginal people report over 20% and LGBTIQA+ people report over 16%. 

We know from studies on bullying that one’s line manager, and next up manager are the major sources of bullying.

A human attribute that can be described as a disability may impact work performance, necessitating an adjustment or an accommodation. But the same cant be said of an Aboriginal person or a LGBTIQA+ person. 

Is it the need for an adjustment or an accommodation that triggers a higher level of bullying for staff with disability – or is there something else at play?

Why bullying matters

By its nature bullying is about perceptions of vulnerability and the exercise of power. It excludes the victim from any sense of equity. There will be some perpetrators of bullying whose psychological make up render them unfit to be in positions of power over others, but bullying is also the product of unconscious conduct. It is not intentional and may not be recognised as bullying by the perpetrator. The problem here may be a lack of self-awareness and maybe a poor response to the stresses of leadership and responsibility.

It is possible to engage in bullying, regardless of why it is triggered in the perpetrator, because human Diversity is not recognised or acknowledged, and because Inclusion is not an intentional practice.

Bullying is the ‘canary in the coal mine’ of organisational culture. Where Diversity and Inclusion awareness and practice are low the risk to the health and wellbeing of vulnerable staff is higher.

Conclusion

There is no simple solution. I am not suggesting we re-envision disability as perceived vulnerability or weakness, but let’s not forget that this is the root of problems for many.

The good news is that the Bell Curve tells us that most folks are likely to be responsive to calls to embrace Diversity and to be Inclusive. The bad news is that those who are not are often likely to be managers. The unfortunate reality is also that empathy does not always survive transition into roles of power over others.

Precisely why management and leadership roles must require ‘power over’ another is a question that merits deep thought.

Here it is not my intent to give managers a hard time. Between work pressures, personal life realities and the expanding demands placed upon managers to be across the many changes in social and cultural values, being a manager is no easy role these days.

But there’s another vital dimension to consider. A failure to embrace Diversity, practice Inclusion, and treat people with Equity is less likely to occur if everyone else is DIEing.

What’s your takeaway to chew on?

Introduction

I was humbled to read in The Guardian of the death of Hale Zukas, a name I did not know. The title of this brief message is a quote from him.

Hale was a hero of Disability Inclusion who activism in California laid the foundation for many of the means of access we enjoy today.

A link to The Guardian’s article

Do please read this.

https://www.theguardian.com/society/2023/jan/08/disability-rights-warrior-hale-zukas-life

Conclusion

We need reminding, now and then, about what is possible when we have the heart and the imagination to dare demand equality.

Introduction

After my last essay I was reminded that people with disability are still being called ‘inspiring’. My immediate reaction was to ask, “Who is inspired, to what are they inspired, and what action have they taken?” To be fair, I will allow that a person with a newly acquired disability may be inspired by a Paralympian to participate in sports. But that’s not how it usually goes.

The colonisation of identity

I have often been told that I am inspiring, and I have had to bite my tongue. I was supposed to feel good that I had excited a rush of emotions, triggering a dopamine hit like a small win on a poker machine. I don’t come with sound effects – just a cranky silence.

If my visible disability inspired action toward greater enactment of inclusion I wouldn’t be writing this essay. It doesn’t, because a dopamine hit triggered by an excitation of a sentiment of empathy or sympathy doesn’t change behaviour. It just stimulates a desire for more hits – more expressions of sentiment. 

My theory is that my identity as a person with disability is co-opted in the service of making others feel good while delivering no benefit to me, or other people with disability.

Here is an illustration of how this works. The 2021 NSW Public Sector State of the Sector Report noted that people with disability are the most bullied segment of the workforce. It also noted (on page 39) that “Bullying, discrimination, sexual harassment and racism should not be tolerated.” Note the passive ‘should’, rather than an active ‘will’ or an imperative ‘must’. What is going on here?

On page 47 there is a graphic chart on bullying, which I will translated into approximate figures – people with disability 24+%, Aboriginal people 20+%. LGBTQI people around 17%. Two other groups over 15% were regional and frontline staff – that’s a whole different problem area.

On page 6, in Commissioner’s foreword, we read “The workplace experience for people with disability is an area in which I want to see us make significant improvements. There is much to be done to ensure people with disability feel they are included and belong in the workplace, and are supported to do their best work.” Note the expression “there is much to be done.”

The report does not say people with disability are inspiring. But the problem is the same. There is a problem – staff with disability are being bullied at a far higher rate than other staff. They are not, therefore, ‘supported to do their best work’. There is an acknowledgement that there is “much to be done”, but  bullying is only passively frowned upon. Conflicted and mixed messages.

But here’s the thing – if you are supposed to be committed to Disability Inclusion, but you aren’t really, making a show of being so is all that is needed. That showing can give you a dopamine fix and fool you into thinking the sentiment is real. Substituting sentiment for action is something we all do. This is why we fail at our efforts to convert a ‘new year’s resolution’ into action.

Saying you are committed to Disability Inclusion doesn’t mean you are. Only acting out that commitment is real.

This is a cranky point for me. When people express empathy for, or sympathy toward, people with disability but don’t do anything it comes across as a form of abuse. Our identity is used to serve their ends – they get the dopamine hit and we get nothing – except an expectation we should feel good because we have inspired somebody to express a positive sentiment. This is not okay.

This isn’t a problem solely for people with disability. Inclusion in general is mired in sentimental inactivity. Iris Bohnet’s What Works is a critical examination of stalled efforts on women’s equality in workforces. Her solution is intentional and systematic action – going beyond the sentiment.

Leadership is where empathy goes to die

In an earlier essay I wrote about how it is acknowledged that leaders lack empathy, and this seems to be something innate in our evolutionary past and our neurology. I get that. I see that in many situations, empathy impedes effective leadership – war is a good example. I am not saying I approve, just that I understand that what lies in our evolutionary past is what it is.

But that’s not okay these days. Our cultural values have evolved faster than our personal reflexes. Even the military has had to adapt. Now concern for individual wellbeing is a necessary consideration. Expressing an inclusive sentiment, getting a dopamine hit and moving on without converting that sentiment into action isn’t okay – in theory. It still is in practice.

Part of the problem is the reliance on a purely intellectual input into management and leadership training – such as it is. Management and leadership practice is often several decades behind research and theory. But its worse than that. The idea of emotional intelligence has been around since 1990 and popularised in 1995 (when I first encountered it). That’s at least 27 years ago. And yet its little known among current managers/leaders.

The reality is that genuine empathy compels action – and that’s a problem within an organisational culture. Action demands Resources, Attention, Commitment and Effort (RACE). And it’s not a ‘race’ managers/leaders will run willingly without strong leadership from on high.

Inspiration without action is homeless

I get that when a person says a person with disability ‘inspires’ them that they intend to express genuine good intent. Melinda Briana Epler, in her great podcast, Leading with Empathy & Allyship, reminds the listener constantly of the need for consistent action. There is no point in being empathic if you don’t take action.

If being inspired is not anchored to a commitment to action it becomes parasitic. It doesn’t have a moral home and so colonises the identities of the people it purports to admire and support. It draws energy from the very people it imagines it is contributing to. It turns their needs into its nourishment.

Being inspired is self-serving – unless it triggers a passion backed by action in service of a cause.

It’s okay to be inspired to act by a person with disability

There are some people with disability who humble me. Their fortitude, determination, and dignity can leave me feeling like I still need to sort my attitude to what I have been through. We are all learning how to live with, and grow from, what has happened to us.

Acquiring a disability doesn’t turn people into saints. It doesn’t make them admirable or role models in a general sense. But what you can learn is that the human spirit has a capacity for resilience that can surprise those who have faced no great life challenge. This is true for so many people – those who have experienced abuse, torture, violence, and traumas of many kinds.

People with visible and obvious disabilities are people apart, a special category of inspirational and heroic sufferers of misfortune. We are the icebergs of humanity – the visible aspect of struggle and trauma. We represent, by accident, the human spirit as it expresses the universal potential for resilience.

If we inspire anything, let it be that you too can do what you think we do – and that this is what you find admirable. 

Conclusion

I am aware that there are people who style themselves as disability advocates and who respond to the heroic/inspirational model. They have a role in that they may make a positive difference for some people.

But it’s a limited role that has no function inside organisations – which is where I am focused. Disability Inclusion is a tough gig – as is the whole spectrum of Diversity Equity & Inclusion. Organisational management and leadership are part art and part science – the science is developing constantly and the demand on the art is increasing.

We must avoid sentimentality and the allure of the dopamine hit and attend instead to genuine action for change based upon sincere empathic response. Real effective leadership in driving and fostering positive change depends upon clarity of awareness and depth of commitment to knowing what is going on.

Introduction

I was discussing a mutual acquaintance with a former colleague. This person had acquired a significant disability. Their person style was abrasive. I wondered whether the trauma of the acquired disability was influencing their personal style. 

I recalled my 10 months in hospital. I was paralysed for 3 months, and the remaining 7 months were a grimly determined struggle to recover control over my body. I ended up with life altering residual disability in my ankles and wrists and hands. 

There was no psychological support offered. The focus of attention was on the body, not mind or emotions. 

I was 18 months off work, and I came back in not a good head space, or heart space. I was determined to recover my ability to work effectively. That was seen as heroic. But it wasn’t. It was survival, and I was freaked out. I know that now. I didn’t know at the time.

We are not heroes

A few years ago, I was getting my crutches out of the car when a guy walked briskly by and called out, “You are my hero!” He was gone before I could react and respond. I would not have been civil. 

Quite a few people confessed that they couldn’t have done what I had. To them I said they were selling themselves short. 

I am not suggesting that genuine heroes do not acquire catastrophic disabilities – only that the measure of being a hero is not the disability, or how it is handled.

If anything, people who have catastrophic experiences which leave them with a disability are way-showers to those who have had no discernible trauma in their lives – you too can do this. We are resilient, but we also suffer.

Permission to grieve?

In the spectrum of what can happen I am comparatively lucky. I did not injure my spine. I still have all my limbs – but even so a guy I know with two below knee amputations walks better than I can. 

Still, I haven’t felt there was permission to grieve granted to me by those who cared for me – and I scarcely allowed that for myself for a decade. 

Grief is about letting go, not feeling sorry for oneself. It is about acknowledging and owning what has happened, not suppressing, or denying it. I lost the ability to garden, go bushwalking, perform home maintenance tasks and a bunch of other things that were integral parts of my normal. I am reminded constantly of that loss, not because I dwell on it, but because the garden still needs tending, as does the house.

But grieving is not just a one-off thing. It can last a lifetime. A friend who lost his son to bone cancer when he was just 17 remembers his death with his daughter each year. And when an experience re-defines you as different from those you were once like the reminders can be constant.

One of my former colleagues became suddenly deaf after being given medication for a condition that had nothing to do with his ears. I spent quite a few hours on the phone with him once he acquired hearing aids that allowed him to use a phone. He was traumatized by his sudden loss of hearing. Nobody had spoken to him about the sudden loss or let him speak about his experience. In 2019 he spoke at a seminar on disability awareness held for regional staff members. He talked about what felt like to become deaf, and the struggle of adjusting.

I saw him change – from being angry to being an advocate. He was angry because he had become deaf. He was frustrated nobody he worked with understood that. Rather than giving empathy they were remote. They didn’t understand – how could they. He didn’t understand but was expected to do so. He was expected to be ‘heroic’, but that was a role imposed – as it always is. And we assume heroes don’t grieve, they ‘suck it up’.

Courage and determination aren’t exceptional

I constantly remind myself of Claire Cunningham’s observation that disability is just part of the spectrum of being human. People quietly experience and endure shocking and painful experiences – and we adapt mostly – though in ways that are not always ideal. 

When I was in hospital, I became alarmed that my welfare was at risk, and I became angry and militant. I look back with no apology. My energy was directed only at the people who put me at risk. They had assumed I was to be consigned to a nursing home. I had a differing opinion.

These days we understand trauma much better that 14 years ago. But popular perception has not caught up. Trauma informs so many lives, but only a few are pressured to be heroic.

Exclusion also causes trauma

Apart from the impact disability can have on one’s personal identity – the personal sense of no longer being who one was – the exclusion from being like other people is deeply painful at first – then it becomes an ache that does not go away.  

It takes time to adapt. We are neurologically programmed to favour those who are like us, so becoming unlike those we were once like triggers a sense of removal. This is true even when our in-group remains apparently accepting and embracing – subtle act of isolation can still apply.

This isn’t a moral matter, but a biological one. The obvious area where this is most telling is in intimate relationships – and this can impact social relationships as well.

We humans are social beings. Our sense of identity depends on how we interact with our community and in-groups. Subtle acts of exclusion can sting deeply and wound. A gross act of exclusion can be seen as transgressive to a group, but the subtle is part of the normal.

This touches on the more complex area of identity and intersectionality. I want here to affirm that trauma can be a personal experience because of a catastrophic experience, and then a social one as the aftermath of that personal experience plays out in one’s life – in relating to others.

The tyranny of the able ideal

It’s not like there haven’t been people with disabilities until recently. Men, in particular, have routinely lost limbs in wars or accidents. And yet designing the world inhabited by humans, something we have been doing for millennia, has only recently become sensitive to the diversity of human conditions.

It’s as though we have become hypnotized by a vision of a human ideal – a mythic average person who has no impairments to senses or body or psyche. It is from this perspective that a person with disability is so often viewed – even by people who are nowhere near that ideal average human.

The upshot is that people with significant disabilities are seen as non-conforming to that ideal – and are heroic in our efforts to live in that idealized world. It’s like what has changed in the minds of those who commission and design the built world has been the revisioning of people with disability as heroes who should be catered to, rather than seeing them as people who express part of the spectrum of being human – people they have duty to serve, to embrace as one of them.

There is a profound difference between making the built world accessible to people with disability and making it available to the spectrum of human expression – in relation to which a person with disability is only a reference point of lived experience, not the primary or sole beneficiary.

Two struggles

The social model of disability is useful in that it draws attention to the way the idealized world is not compatible with the spectrum being human – of which disability is but a part.

But it also creates a distortion – the impact of disability is external – out there in the idealized social world. It is also internal. Behind the imposed heroic masks there is also trauma, unresolved grief, and physical pain.

This reality was brought home to me when a former colleague spoke of his process of getting out of bed, showering, and dressing. He has prosthetics on one arm and one leg. He also spoke of the constant physical pain. The conversation was triggered by my question about why he thought he was being bullied by his manager and the next up manager. He was explaining that just getting to work was sometimes such a struggle he felt flat and dispirited. Anticipating the bullying did not help. Rather than trigger in-group concern, he triggered exclusion, not only because of his obvious disabilities but his mood and manner. He was not ‘one of them’. He was not ‘abled’ like them, and he was not a member of the management in-group. He was an easy target for exclusion.

In my fortunate circumstance I rarely experience pain related to my disability. Everything I do must be conscious and deliberate. I cannot lose attention when I am walking. I cannot lose attention when I am holding or manipulating anything. If I fail to remain attentive, I will fall or drop things. My walking speed is at snail’s pace. I am kept upright by two Canadian crutches. Before my disability was acquired, I was a walker. I loved walking. I grew up in the Tasmanian wilderness.

Navigating a world not designed to accommodate the range of abilities present across all members of our community is a varied experience. Sometimes there is no barrier. Sometimes there is, and it is absolute and exclusionary.

Navigating the inner world is likewise a varied experience. There may be trauma that has not been resolved. There may be grief caused by the loss of senses or physical utility that is unexpressed. In this people with disability are no different from all other people whose lives have been rocked by trauma, loss, pain, or stress. It is that we often have inescapable signs. You can’t miss crutches, wheelchairs, guide dogs, or white canes.

The tenacity of the human spirit

To admire a person with disability as somebody special, or heroic, because they are seen to be out having a go devalues the human spirit. It also devalues the idea of the hero.

According to the Oxford Dictionary a hero is “a person who is admired for their courage, outstanding achievements, or noble qualities” I’d add that this [in my view] pertains in relation to service or an ideal, not about a personal matter. the word ‘hero’ is loosely applied these days. I prefer that it is reserved for those who risk their lives or wellbeing in response to a sense of duty, and in the service of others.

When I was in the rehab ward, I met a guy who had had a stroke. It was his 2^nd. He told me how he had spent 2 years learning to climb the stairs to his bedroom after the first. He had made it, and then the 2^nd one hit him. He said, with a sigh, that he would have to start all over again. But his wife interrupted and said they’d move into a single-story home.

If you haven’t been clobbered by something catastrophic you will maybe not appreciate how resilient the human spirit is. That’s our normal as humans. We are resilient. Heroes put themselves in harm’s way. Some may, as a result, have to struggle to recover as best they can from the harm inflicted upon them in the performance of their service.

Conclusion

There is nothing exceptional about striving to recover what one can from a catastrophic event. If anything, those who do strive are exemplars to remind others just how resilient we all can be – not outliers doing something remarkable.

The guy who said. “You are my hero” could said, “Thank you for reminding me how resilient I can be”.

Seeing us as heroic can hurt us. In the whole of my recovery, which was 18 months [10 of which were in hospital] before I got back to work, not a single person asked how I was coping emotionally. From the time I was suddenly lying on the loungeroom floor unable to move I felt nothing – no fear, no anxiety. Was it shock? Was it a protective reaction that shut down strong emotions at a time they were not useful?

Later, after discharge, I wrote a lot. This is from 21 August 2009: I could do no other thing than I have done. It is not remarkable to be oneself, to be other than in character. For this reason, I have long detested the notion of the “hero”. Courage and bravery are not extraordinary or remarkable. They are commonplace. People of character and integrity always stand up when circumstances demand it.

I think I wrote a lot of my grief out after my discharge in February 2009. But there is still something that may never leave me.  When I see people walking freely there is a twinge of loss – I used to do that.  I am okay with that. It reminds me of what is important.

Introduction

As Christmas nears, I am taking the time to look back on the year from a Disability Inclusion perspective. Some good things have been happening, and some things remain unchanged.

The good things

In July last year I joined my local council’s access advisory committee. Through that I have been involved in consultations with architects and designers re buildings, parks, playgrounds, and other facilities under the responsibility of the council and the National Parks and Wildlife Service.

The commitment to disability access is genuine and deeply rooted in the personal commitment of staff. And it is growing.

The NSW government’s annual survey of its public staff – the People Matter Employee Survey [PMES] – indicates a steadily improving willingness of staff to indicate on the survey that they have a disability. Something is working better for that to be happening. I was pleased to see that my former employer, the Department of Communities and Justice was the top performing department concerning the number of staff recording that they have a disability – 8%. It was 4% in 2019 when the innovations I led kicked off in a big way. 

Earlier this year I participated in a disability recruitment exercise for a federal department. It was run by a private recruitment firm. It was sophisticated, professional, and sensitive to the needs of applicants. I was impressed by the whole process. It should be the benchmark standard for recruiting staff with disability.

What hasn’t improved

Around mid-year the NSW Department of Premier and Cabinet woke up to the fact that there had been zero progress on a Premier’s Priority on lifting the percentage of staff with disability from a low of 2.6% to a modest target of 5.4%. Instead of owning up there was a panicked election-induced effort at a smoke screen to hide the absence of any strategic effort.

Setting a target is all well and good, but failing to develop a means of hitting it reeks of a lack of authentic commitment at the highest level of the sector’s leadership.

The Public Service Commission’s website observed that “In 2022, the proportion of public sector employees choosing to share that they have a disability through reporting in our HR system was 2.5%. Achieving this 2025 target is particularly ambitious as disability is multifaceted and complex.”

You’d think that knowing a target was “particularly ambitious” might have excited a determined response. The same web page goes on to say, “We are committed to building strong foundations”. This is misleading. The graphic used shows the disability employment at 3% in 2014. A benchmark figure of 2.5% in 2018 is shown at a ‘starting point’ on the journey to 5.6% in 2025. In 2022 the rate remains at 2.5% after dropping to 2.4% in 2020.

In 2018 there were 7 years to hit the 2025 target. In 2022 there are 3 years. Zero progress in 4 years. Committed to addressing a multifaceted and complex challenge? No.

There is an important difference between improved figures on the PMES and the formal diversity data, which has not shifted in line with improved PMES data. The situation is multifaceted and complex. I agree. But I don’t agree that the people charged with addressing the challenge have a clue.

I am still hearing horror stories of staff with disability being subjected to bullying and abusive conduct. The managers/leaders responsible rightly feel confident that they are immune from being held accountable. Their conduct breaches Code of Conduct and Work Health & Safety obligations. The absence of accountability is the single most important inhibitor of change. There is no point in espousing a ‘zero tolerance’ to bullying if what you exhibit is a generous tolerance. Unless, of course, you say you have ‘zero tolerance’ because that’s what you are expected to say – and you think nobody really thinks you are serious – which you are not.

The benchmark texts on this theme are clear. Set a standard and model it. Ensure that leaders understand you are serious by holding those leaders who fail to meet it to account in a meaningful manner. The biggest inhibitor to change at a reasonable rate is the presence of exemptions from accountability granted to leaders who fail to meet the conduct standards by fellow leaders.

This is a known issue. But its not a bug, it’s a feature. And because it’s a feature it can be designed out – if there is a will to do so.

The persistence of goodwill

There is an abundance of goodwill and a desire for inclusion is evident. I see this when I talk with former colleagues 

The PMES results for my former employer are instructive. In 2019 two departments (NSW Departments of Justice and Family and Community Service) merged to create the Department of Communities and Justice. In 2019 the PMES results for both departments showed 4% of staff had a disability. In 2020 this had risen to 6% for the newly formed department. In 2022 that number was 8% – doubling in 3 years.

This improvement can be put down to the work of the Disability Employee Network, the response to the department’s participation Access and Inclusion Index, and the response to the Disability Inclusion Action Plan. These 3 things impacted the organisation’s culture, letting individual staff members to unleash their spirit of goodwill. I was part of stimulating that improvement. 

The tension between goodwill and leadership cultures

Stimulating goodwill can do wonders, but it can run into the frustration of leaders not facilitating changes that seem to be plainly needed. Organisations are necessarily hierarchical and the power to drive change is strongest among the leaders.

But the paradox is that leaders become less empathic, less compassionate, and little interested in holding members of their own leadership group to account. There are sound psychological and neurological reasons for this. The good news is that now we know what the problem is solutions can be designed and implemented.

Conclusion

This year has been a wonderful opportunity to work with people who are caring and open to ensuring that inclusion of people with disability is part of how facilities and services are designed and delivered. These are not people who are necessarily well-informed about disability, but they are receptive and responsive when we engage with them. That’s how inclusion grows through the community.

I give leaders a hard time as a group. That’s because the research on leadership as a class merits doing so. That doesn’t mean I am down on leaders individually. In fact, the success I enjoyed as a Disability ERG Chair would not have happened without the support and commitment of senior leaders. Leaders are critical to magnifying the goodwill of staff so that it can be the force for good it has the potential to be. 

In fact, that’s my point. Leaders can magnify or impede that goodwill. DCJ’s 8% of staff with disability in 2022 is a great improvement on the 4% of 2019. It was achieved because leaders and staff collaborated in stimulating the process of positive change. That collaboration kicked off strongly in 2018 and started delivering results in 2019. This is what could be achieved with partial leadership commitment. Had it been whole who knows what the 2022 result could have been.

As a community we are heading in the right direction as we are more and more able to express our goodwill and be inclusive. On a government level there are impressive commitments of resources to ensure that publicly funded services and facilities are available and accessible to people of all abilities. 

Before I acquired my mobility disability in 2008, I could go bushwalking with no concern about whether the track was accessible. Now I need a track to be smooth and not sloping too much, and with places to rest safely at regular intervals. There are not many tracks like that, but they are being created as the financial means to do so becomes available. 

A friend sent me an ABC article on disability employment today, noting that things hadn’t improved for people with disability in the past 3 decades in terms of overall numbers. That’s true for a number of reasons – mostly that organisational leaders have not committed to changing that number.

But in that 30 years things have massively improved for many people with disability. We are more inclusive as a community. That’s been my lesson for 2022. I had spent the past 4 years focused on disability employment and not really been aware of the wider changes across the community – and driven by the public sector. I needed that balancing experience.

Yes, there’s a lot we need to do to address employment of people with disability. Yes, our organisational leaders must step up and own their responsibility to make stuff happen and hold their leaders to account if it does not. We must not diminish how important this is.

Tomorrow morning, I will take my regular walk at Echo Point in Katoomba and be grateful for work done to create an accessible walkway so I can sit quietly and feel close to the wild world. I am deeply grateful for the work done [and resources committed] to make that possible.

My best wishes to you for the Christmas/New Year. I do hope that you have an enriching, restoring, inclusive and accessible time.

Let’s make 2023 the year of engaging with our organisation’s leaders in a more effect way, one that will help them become more committed allies and champions.

Introduction

In the past few weeks, I have read 3 books that are deeply connected – The Essentials of Social Psychology by Wind Goodfriend, The Moral Animal by Robert Wright, and Influenceby Robert B. Cialdini.

I had been looking deeper into the idea that inclusion is, for many of us, an evolutionary step. Even though we are people of goodwill and compassion we are still influenced by deep seated reflexes and biases that only selectively favour inclusion. The basis for that selectivity is whether a person is like us, part of our ‘we’ group (in group).

We have multiple identities these days – our cultural, racial, and religious identities, our families, politics, and affiliations with geographic, sporting or interest-based groups. It’s a far cry from the tribal settings of our ancestors. Back then identity was clear cut and comparatively simple.

Nested identities

Our sense of identity matters because it is the basis upon which we include or exclude others. 

‘We’ group membership can be multi-layered in a work context. We can be employees of organisation X, members of work team Y and members, or not, of a leadership team.

So, we have elements of identity that are formed at biological, cultural, and work levels – and they all exert influence at the same time. That’s a lot of processing pressure for our brains if we are trying to figure out how to be the best person we can be – inclusive and compassionate.

Mostly, given the circumstances, we do pretty well. We live in a complex pluralistic community that works okay most of the time. This is partly because we have set up our exclusions and inclusions in a way that does not cause strife – but can still leave inequity and cause injustice.

A complex pluralistic community with a commitment to equity and inclusion is a relatively novel idea. Its not something we are naturally tuned to – not on a biological, psychological, or cultural level. It is an aspiration. The ‘we’ group expands from the tribal to the societal. That’s a big evolutionary step.

Intentional change

Melinda Briana Epler, the host of the podcast Leading with Empathy and Allyship, opens each episode with a reminder of the need to take consistent action. She says that change is as much about unlearning as learning, and that intentional action is needed on a daily basis. It isn’t easy.

Neither should it be. Moving toward an aspirational goal always requires personal commitment and intentional actions consistently performed. Our natural goodwill is a great foundation for creating reasonable conditions in which people are treated in an okay manner. But it’s not sufficient if our goal is to attain that aspiration of inclusion and equity.

Of course, we may not have agreed to sign on to that aspiration. This can be something of a problem if governments and organisations frame aspirations on our behalf and then assume we assent. Even if we do assent the mere presence of legislation or policy is not sufficient to guide change.

Robert Cialdini explores the idea of commitment to action. There is a powerful difference between action commitments that are elicited as part of a persuasion strategy – often manipulative – and those that are freely and intentionally given by an individual or a group.

Commitment, compliance, and consequences

Imposed aspirations are rarely thought through by those who develop the ‘good idea’. Conformity is never complete across a population, and among those who do conform and aspire to the goal, there is no uniformity.

Positive change is a messy business. Nothing is clear cut. Provided there are no particular impediments, things will change for the better – albeit slowly and messily.

Cialdini addresses an unexpected version of the ‘we’ group. It is when leaders naturally see themselves as forming a ‘we’ group, and their staff as ‘them’ or others. A feature of ‘we’ groups is leniency toward members. We are, for example, more forgiving of family members. The same might also apply with one’s work team members versus another team.

For Cialdini a code of conduct, which establishes minimal acceptable standards, does not have any real power if ‘we’ group members are lenient towards those who breach those standards. This becomes important when we consider conduct which is considered so unacceptable as to have a ‘zero tolerance’ declared. Cialdini argues that major breaches of a code of conduct, or repeated minor breaches, should lead to dismissal. Why?

Aspirational goals are part of the mechanism for evolving a culture. We can seek compliance through encouragement or formal accountability. We need both – applied in the right measure. The presence of formal accountability measures that cannot be circumvented because of ‘we’ group leniency are crucial to the community. They affirm the value of the aspiration. They say, “keep moving in the direction we are going.”

Formal accountability has always been present in human culture – from the tribal level up. It has always been associated with what has been highly valued – to protect it and reaffirm its value.

Conclusion

We are creatures of habits ingrained at a deep level in our biology and psychology. But we are also aspirational and adaptive – responsive to opportunities to exhibit ‘the better angels of our nature’.

Inclusion in our communities and our workplace – in our complex pluralistic culture – is an aspiration to which we are adapting (messily and unevenly). It is part of governmental and organisational policy.

There are impediments to this intentional change that can be managed better by using the insights of evolutionary psychology and methods of ethical influence. Two are especially important:

1. How commitment to the aspiration is shared and affirmed – leading to consistent action. The goodwill that responds to the aspiration must be supported.
2. How the more egregious acts of non-conformity by influential people are prevented from being subject to ‘we’ group (in group) leniency and exemption. Leaders must lead.

Of the 3 book Cialdini’s Influence is perhaps the most pertinent – because it encapsulates the content of the other 2 and draws out the most important principles. Do read it.

Introduction

A former colleague, Leanne Duggan, sent me a link to a great essay on blind people and audiobooks. She is featured in the essay, and it was great to know that her voice is being shared.

We have blind people to thank for the development of the talking book. It’s an interesting history – a debt of gratitude that should be known and acknowledged. The clunky tech of yesteryear has evolved into the sweet ease of an audiobook on a smart phone.

Please take the time to read the essay. It’s well-written and not long.

The greater gift

Audiobooks are now mainstream. They can be listened to as a specific intentional act, but they can also enrich commutes and the performance of tasks that take very little conscious attention. 

The benefits for blind people are obvious. For them audio is their primary means of access to entertainment and information. When we sit down to watch television, we use eyes and ears. In the days before television and the internet books were the go-to source, apart from radio. Without vision, books were inaccessible (with the exception of braille).

Audiobooks are a blessing to people with other disabilities – ones that making picking up and holding a book difficult, painful, impossible, or simply unpleasant.

My ability to hold things has deteriorated. What was once a sensual pleasure has become an ordeal (bibliophiles will know what I mean). I have been giving away my beloved hardcopy books, so they can be loved by others, and not remain now mute tokens of days gone, never to be recovered.

Audiobooks are a blessing also to those with no disability but may be time poor. You can’t walk and read safely, but you can walk and listen.

Conclusion

I can’t imagine life without audiobooks now. The essay gave me an insight into blindness I hadn’t thought about, and a chance to be grateful to those pioneers of talking books.