Category: Uncategorized

Introduction

I am no fan of online disability awareness programs/courses. You need a high level of motivation to make the content stick. As an appetiser to a substantial meal, they may have some virtue. But you don’t trigger a hunger by feeding a person a stream of information. 

We must get away from what I call the ‘cognitive silver bullet’ myth. If information changed behaviour, we would have no health problems in our community. There would be no domestic violence, dangerous driving, or a thousand other human follies. Information has a place, but it doesn’t trigger change – unless the person seeking information is ready to change their perception or behaviour- and is highly motivated. 

Back in late 2019 I was experimenting with an idea I had picked up from the Australian Public Service Commission. I arranged for some managers to come to talk disability with myself and four volunteers from the DEN. We had around 6 managers (I didn’t take notes). It took a while for the conversation to flow. It was a novel experience for everyone. But when it got moving it was deep and engaging.

At the end, one of the participants, a Director, revealed that she and three of her colleagues, who were also present, had participated in an online disability awareness program the week before. The experiment was, she said (and her colleagues agreed instantly) far more valuable. They were highly motivated and found the direct experience of talking to staff with disability the most potent trigger for changing beliefs and conduct.

Almost any form of awareness demands repetition. We have to build responses through repeated exposure to make experience stick. This isn’t true of the extremes. Burn yourself once and you won’t need a repeat experience to convince not to touch a red hotplate on a stove. At the other extreme, a single experience of ecstasy will endure a lifetime or two.

Normal reality is between these extremes and repetition of exposure to information or direct experience is necessary for a lesson to become integrated into our psyches. That is true for learning to play the guitar, drive a car or dancing.

How Easy is it to Understand Disability?

I have acquired disabilities that impact my mobility, grip, and manual dexterity. As a consequence, I understand the issues related to those disabilities. As a DEN Chair I spoke to people with a range of disabilities and quickly discovered that I needed regular reminders when engaging with my deaf and blind colleagues. It took me a long time to make my understanding habitual. Even so, earlier in 2021, I sent a blind colleague who uses a screen reader, an edit of a document she asked me to review. I told her I had highlighted passages I wanted her to review. I remember her laughter so clearly. In my mind ‘reader’ was a visual notion. Her screen reader converted visual text to speech. The highlighting meant nothing. 

I had good intent, and a strong desire to be understanding. But my habit of mind drove through more than two years of knowing my colleague and made me an utter idiot, still. That was a sobering and salutary lesson. How could we convey, in any useful manner, sufficient vital information about disability in a half hour video, or an online course?

My next lesson came when I was asked to provide feedback on a disability awareness video. It was structured so that one could not progress unless correct responses were given at the end of each section. I was doing fine, but was not overly impressed, until I came to a section that proposed that people with disability are not limited in what they want to do. Well? Wasn’t that the very definition of what a disability is? I thought to myself, I can’t tap dance. Not that’d I’d like to. But there’s no way I could do that. At the end of the section, I knew what the ’correct’ response was. But it was wrong. I gave the right answer, but that was wrong.

I didn’t progress on the evaluation. I simply refused to give the wrong right answer. I was blocked. When I pointed this out to the unit responsible, I was told that the course could not be changed because there were no funds left. What was the point of asking me to give an assessment of the course if it could not be amended?

More to the point, what was the point of telling somebody a person with disability is not limited by their disability? I understood the point being made. But it was made badly. The point was that disability does not limit a person in every way – and that so often those limits are set by the environment and not the disability – but not always. Also, don’t you presume what I can or cannot do.

By telling people things that are not true, and which are patently absurd, we water down and romanticise disability in a terrible way. We block the empathy response, and we objectify the disability.

A few years back (2008/9), as part of the Don’t DIS my Ability campaign to build disability awareness there was a publication called Made You Look. The cover of one edition featured a young woman with bilateral below knee amputations holding a skateboard. It got my attention. It made me look. But for all the wrong reasons.

Maybe this was early on in the disability awareness campaign movement, and this kind of ‘shock tactic’ was needed. I am prepared to engage in an argument on this point; and be shown to be wrong. I don’t think it was a good move. Maybe it was what happens when people with good intent, but no idea, and people with disability, but no finesse in self-advocacy, come together.

The image triggered in me a reaction against the dissonance of the young woman and the skateboard. The answer to any question I had was “No.” The publication’s title was Made You Look, not Made You Care. The focus was on a cognitive response that triggered a rational evaluation, not an emotive response that triggered empathy.

How Do You Teach Disability Awareness?

You can’t teach disability awareness at an emotional distance. You can say obvious stuff like deaf people can’t hear and blind people can’t see, and people like me can’t tap dance, ski, skate or play any sport involving the ability to stay upright without supports. 

Where this approach gets things horribly wrong is that it shouldn’t be about the disability. It’s about the person with disability who matters. Let’s be more specific. It’s about the person. No, let’s go a step further. It’s about being sufficiently self-aware to not make a fool of yourself when you are talking with a person with disability.

Making the problem about the disability misses the point. This point of view proposes, in essence, that you need foreknowledge of any category of difference before you can relate effectively. 

If only people with disability experience exclusion and discrimination, there may be some merit to this approach. But disability is so complex not even people with disability can be assured of being sufficiently disability aware, just because of their own disability.

Would we assume that an Australian should understand all other Australian people, or what it is to be Australian, just because they are Australian? Of course not. When we do encounter ‘representative’ Australians, they are fictions. Sometimes they are absurd fictions – intentionally comedic. 

It is true that a community of people with disability are collectively more empathic and responsive to member’s needs. This was repeatedly demonstrated to me with the DCJ Disability Employee Network’s Guidance and Action Team. But the common glue of disability quickly ceased to define the group. The emergent respect, affection, care and support was grounded in the ‘content of character’, not the fact of disability.

How would you develop an Australianness Awareness course? For it to be effective, how long would it be? How much work would a participant have to put it to get any real benefit? There are entertaining videos on YouTube that supposedly help foreigners understand Australians. They are cliched, reliant on stereotypes and, finally, ridiculous. They provide some benefit, but the best message is ‘don’t expect all Australians to conform to the stereotypes’.

In fact, imagine any theme you care to, and ask yourself how much behaviour changing content you could get into a ‘course’ lasting, at the most, 2 hours – as a once off? Exclude any theme that triggers intense emotion or self-interest, of course.

So, Exactly, What is Disability Awareness?

As a person with a mobility and grip disabilities I can have a sense of the lived experience of having disability in terms of the purely human experience of exclusion, inaccessibility and a lack of empathy. But I have also experienced kindness, sensitivity, concern, and respect. 

Disability can confer inaccessibility and exclusion as a consequence, if the environment is unsympathetic – quite apart from any attribute of the disability itself. 

My disabilities have no impact if I am sitting in my lounge room watching television on my chair; and having a coffee from my mug (double walled stainless steel). My home environment is set up to minimise inaccessibility. The same experience at another person’s home may be very different – their chairs may be too low and soft for me to get out of, and all their mugs may be ceramic and too hot for me to hold. Despite the warmth of the hospitality, I am ‘disabled’ by the environment.

But my host was unaware. They did not understand how my disability might express in their home. Expecting that they would be aware places an unreasonable burden on them. It is up to me to let them know what would impact me, and to make an assessment about whether any attributes of their environment are a deal breaker about visiting. 

When it comes to public spaces and workplaces there is a reasonable expectation of universal accessibility, or, a quickly moving aspiration toward that. Here, two factors come into play – Inclusive Design, and empathic response to need for accommodation.

There is a variety of physical and sensory factors that can be designed into an environment that reduce the experience of inaccessibility and exclusion. Some of these, from my own experience, include ramps or lifts to supplement stairs, chairs in waiting areas that are not too low or too soft, alternatives to ceramic cups and mugs (sadly mostly take away cups), toilet cubicles with rails for people with ‘ambulatory’ disabilities (yet to be common or universal), and the abolition of round door-knobs (my pet hate).

There is a clear domain of disability awareness in design. There are professional access consultants for this as well. Consultation with potential users is an essential. A few years ago, I spent a day in a sophisticated consultation program on the design of new Sydney trains. That got down to details like whether an emergency help button near the floor of an accessible toilet was in an optimal place if a user fell.

A short course on what goes into inclusive design and the training of access consultants would potentially convey the depth of complexity of the design field. Awareness of complexity is a good thing if it excites awareness of a need to be more alert to the wisdom of not making assumptions. In design, awareness of disability is essential to arrive at inclusive accessibility. But this is a professional area most of the time.

Disability that is permanent also informs short term and situational inabilities that can lead to exclusion. So, disability is a reference point for inclusive design, but not the only thing it is about.

A course introducing Inclusive Design concepts helps participants understand how to learn to think inclusively – as a discipline. I encourage this. Inclusive, or Universal, Design can alter the way we think about and act. But it takes repeated exposure to lock in those changes.

Then there is the non-specialist area of empathy, compassion, and respect.

Exclusion and a lack of empathy and respect are not experiences exclusive to people with disability. They are shared by people we lump into the general category of being ‘disadvantaged’ – and that’s a big group.

Disability is the only persistent human category that ticks the physical and sensory accessibility exclusion box. There are other forms of exclusion experienced by people who may be considered variously ‘diverse’ or ‘disadvantaged’ – and which may be also experienced people who also have an accessibility disability.

For me, this makes Disability Awareness about three things: 

• A professional requirement for developing genuinely inclusive designs – physical and sensory – environments, tech, or systems. This is real disability awareness – where specifics of a disability are needed.
• A focus on the accessibility issues – in which case calling it Accessibility Awareness would be far better – because it is Accessibility, not the Disability, that merits awareness.
• Or it is about inclusion, which impacts many people we describe as ‘disadvantaged’ or a minority member of a ‘diversity’ group. In which case let’s call it Inclusion Awareness.

For the majority of people with disability I want to suggest that Inclusion is the key concern. If that is fixed, the problems about accessibility have a better chance of being addressed. We are kinder to people who are included.

The Importance of an Accommodation

The buzz word in disability inclusion is ‘adjustment’. This is fine where some formal process is required to make an actual adjustment to what is otherwise normal or business as usual. 

Accommodation is a ponderous word that I feel obliged to use because no other simpler word comes to mind. The word has a few meanings stemming from the Latin root – accommodare – to fit one thing to another. The Oxford Dictionary says it is, among other things, “the process of adapting or adjusting to someone or something.”

I want to focus on the idea of ‘adapting to someone.’ This is something we do all the time as we respond to the diverse characters and characteristics of the people we live and work with – and fail to do quite often as well. We fail when the adaptation required of us is either thought to be unreasonable or too hard.

Not so long ago I asked a speaker to repeat what they had said several times. On the second time they snapped “Are you deaf or something?” Did that matter? They were communicating something, and I could not discern what it was. Whatever the reason (my alleged hearing loss, background noise or unclear speech), the speaker was unwilling to gracefully adapt to my need. That was odd, because they were wanting to communicate something to me – but only on their terms, it seemed.

A request to adapt can be interpreted as a criticism, an act of self-indulgence, or an impost. It so often becomes all about the person being asked to accommodate something, rather than the person seeking the adaptation.

Disability is so often where the natural willingness to adapt falls down. A person with a sensory disability may wish to sit closer to a speaker or white board or screen. Sometimes this can become a drama that draws attention to the person seeking adaptation in an unwelcome and embarrassing way.

I want to propose Accommodation Awareness – just do it with good grace and spirit – and trust that the person asking has good cause. Respond to sincere need, not the reason for the need. Now and then responding to one person’s need will generate a counter and contradictory need in another. A request to turn up the air conditioning, for example, is likely to be met with a request to leave it as it is. Life’s complex at times. We have to handle it gracefully.

Psychological Disability

This is a messy and complex area that must be considered here. It is one area of disability I do believe that specific awareness programs must be provided – mostly to dispel harmful misconceptions.

I am not qualified to express any clinical opinions here. I have been around ‘mental illness’ most of my working life in some form – from working in psychiatric hospitals to co-ordinating care and accommodation needs of people with disability who lived in what were once called licenced boarding houses. I have friends and family members who live with PTSD, depression, and other conditions. So, these are observations based on personal experience.

The term ‘mental illness’ is often misleading and damaging. For starters the most common psychological conditions in Australia are depression and anxiety. Neither are ‘mental’ states so much as ‘emotional’ states. There are conflicting views about this, of course. But they are more rooted in debates about what constitutes mind – a philosophical one.

My question is whether it serves any good purpose to infer that depression or anxiety lead to strong impairments of cognitive functions because of the language used. I do not think so. 

Paradoxically people seem quite content to deal with anxiety and depression, or worse, if it does not carry a clinical tag. As DEN chair, I had reports of conduct that should have triggered concern, and would have, had the person not been a manager. These reports included open verbal abuse of staff, behaviour so unempathic it should have set off alarm bells, and behaviour that was openly intimidatory and threatening. Even when senior management was made aware, no action was taken. Perhaps news that the manager in question had a diagnosed ‘mental illness’ may have triggered some response.

From my experience of working with staff who are open about their clinical diagnosis, an occasional request for an accommodation may be sought. But asking for it can open a pandora’s box of misunderstanding, discrimination, and unempathic and irrational response. 

An individual’s mental stability, performance and competence can become subject to doubt. Empathy and concern for their welfare is cast aside. The trigger seems to be the fact of a clinical diagnosis.

I would like to see a course/program that addresses misconceptions and fears about what we call ‘mental illness.’

Conclusion

Disability awareness is not only a misunderstood complex matter, it is rarely actually the main concern. 

If agencies attended to inclusion as a general principle, they will generate the desired change faster. However, inclusion must be first and foremost a human response founded on empathy, compassion, and respect – the ‘heart’ qualities that are at the foundation of relationships.

While there is primarily a rational reason for inclusion (legislation and policy), it will work only minimally as a purely rational exercise. The reason we have that rational, or ‘head’, imperative is that all the conventions, legislation, and policies were predicated on ‘heart-based’ motives. We must never forget that. Inclusion is driven by empathy, not reason. Reason simply confirms it.

Inclusion makes good sense in a purely utilitarian way. It means an agency can tap available talent in a community, regardless of the diversity attributes of individuals – including disability.

Article 1 of the Convention on the Rights of Persons with Disabilities says:

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. 

This is an affirmation from our collective heart. To the extent that it is rational statement, it is only in service of that heart statement.  The purpose of any kind of awareness training or program is to lead to inclusion. It is not to meet a compliance requirement. To that end we must understand that it is awareness of the heart, not the head that is to be achieved. This must inform all our ‘awareness’ efforts.

Any change to behaviour requires repetition. Inclusion, based on respect for the “inherent dignity” of people with disability will work best when a community or culture has a habit of being inclusive to everyone. 

Introduction

I have been listening to David Gillespie’s Taming Toxic People: The Science of Identifying and Dealing with Psychopaths at Work & at Home (2017). It is one of those books I wish ‘normal’ managers and executives would read/listen to.

This has become a repeated theme for me – the harm done to staff with disability by managers who lack empathy, and why organisations should act promptly to respond to reports of their abuse of staff with disability. Here I will lay out the argument in a more specific way, in the context of psychopathy.

Who is the Psychopath?

Gillespie does a good job of summarising what we understand of psychopathy. I will not repeat his work here. Please read the book. But he does make several points critical to my argument here:

• Psychopathy, like other psychological states in a scale, a spectrum – from mild to severe. The only important question is: “When does it become a danger to the wellbeing and welfare of others?”
• Psychopathy is characterised by a lack of empathy and remorse. Other people become objects subject to manipulation, control, and abuse.

Gillespie cites a 2008 study by Clive Body from Middlesex University which embedded a psychopathy checklist in a survey on 346 middle and senior managers. The survey was responded to by staff in government agencies, businesses and NGOs in Perth, Western Australia. The results were instructive:

• 83% of respondents worked with ‘normal’ managers – they scored low on the psychopathy scale.
• 11% worked with managers who showed some psychopathic tendencies. These Body referred to as dysfunctional managers, but Gillespie preferred terminology used by other researchers – moderate psychopaths.
• 6% worked with managers who were assessed as being more fully psychopathic.

The survey yielded some concerning data about instances of bullying:

• With ‘normal’ managers employees experienced bullying less than once a month – 9 times a year.
• Moderately psychopathic managers bullied staff more than twice a month – on average 29 times a year. 
• Psychopathic managers bullied staff more than 5 times a month on average – 64.4times a year

This data indicated that:

• The 6% of psychopathic managers perpetrated over 50% of bullying. 
• The 11% of moderately psychopathic managers were responsible for 26% of incidents of bullying.
• Thus only 17% of managers were responsible for over 76% of claimed incidents of bullying.

Gillespie observed that when Body repeated the study in the UK, the incidents of bullying by moderate psychopaths was as high as 36%.

• This is only one study, of course. But there are safe take ways:
• There are managers on the moderate to severe end of the psychopathy spectrum. 
• They are significantly, and disproportionately, responsible for a higher percentage of the incidents of bullying than ‘normal’.

What are the Consequences?

Bullying can include verbal abuse, physical abuse, sexual abuse and psychological manipulation and abuse.

Gillespie argues that bullies are psychopathic. Some conduct described as bullying can be put down to a stress reaction. Its still not okay; but it is not driven by a persistent unempathic state of mind; and expressed as repeated acts of bullying and victimisation. Managers who ‘snap’ under stress are likely to feel remorse; and apologise.

Bullies target vulnerable people, who are subjected to repeated abusive conduct, unless they can escape.

One of the much touted ‘virtues’ of staff with disability is that they are ‘loyal’ – they do no change jobs often. That’s not a virtue. Its fear, and sometimes entrapment. Staff with disability have poorer career progression prospects. They often have a sense of vulnerability about their continued employment. That fear includes questions of competence, and exposure to forced medical retirement processes.

Here are some quotes from a lengthy document detailing experience of persistent bullying by one person with disability:

• “I have never got over the bullying incidents and I had a lot of paid and unpaid leave. After the bullying incident and the ongoing issues with parking I just wanted to resign but for financial reasons I kept going to work when I was an emotional mess.”
• “In early 2018, I reduced my working hours down to 7 days a fortnight. I did this because as a direct result of bullying. So yet again I was financially disadvantaged.”
• “I have become obsessive about trying to stop [name] from bullying staff. She is a serial bully and usually picks on people that she considers vulnerable. I have witnessed her harm so many people over the years. This haunts me‚ and keeps me awake at night. I have spoken to many people about her and nothing is ever done.”
• “I live in fear that she may start to bully me again by rejecting my work for no reason. She has done this a few times to me. Earlier this year I spoke to my Manager about this and they said that they would ensure that [name] did not approve my work. This did not happen and she is still approving my work.”
• “Because of my disability I have been the victim of bullying many times at the [workplace] and this started when I was in training. At no stage was I offered any support and the complaints that I put in were either mishandled or forgotten. I am not alone as I have seen this happened to many people. This may be debilitating for anyone who is vulnerable. Even now I regularly hear about people who work here who have been victims of bullying and this goes unreported.”
• “Bullying is counterproductive; it robs the victim of their dignity; it affects their health and emotional well-being. After I was bullied I used all my leave and because of this I lost financially. I was an emotional mess for many months.”
• “I have been to several Counsellors but I can’t seem to move on. I feel like I have to try to do something about this so nobody else has to be humiliated and hurt like I have been. But bullying is like ‘the elephant in the room’ that nobody wants to talk about and no action is taken.”
• “There needs to be real consequences for Managers who repeatedly bully subordinates. I have asked several times for posters to be up on the walls encouraging workers to report bullying and harassment and telling them how; but my requests have been ignored.” 

I know the author of these words. I do not think it is possible for a ‘normal’ person to read them and not feel the writer’s pain. But it is plain that the perpetrators of the bullying do not, and that they do not care.

Do Not Delegate Responsibility

Gillespie is clear that psychopathic bullies possess attributes that are alarming:

• They have no remorse.
• They are accomplished and persuasive liars.
• They will lie to protect themselves, and throw the blame onto the victim, if they dare complain.
• They will punish any victim who complains.

Organisations rely on formal complaints processes that are a trap to a staff member with disability who uses that method in an attempt to secure an end to bullying and some redress. These processes favour the psychopath. I can confirm that staff with disability who go through the normal complaints process are more often likely to have the complaint dismissed, and be blamed for making a ‘false’ allegation.

A ‘normal’ manager will usually not let a situation deteriorate to the point where a team member has no recourse but to lodge a complaint. An investigation undertaken by a person unaware of psychopathy is at risk of becoming a tool of the psychopathic manager. All too often complaints against managers are not substantiated on grounds that are often ill- founded. There is, I believe, a clear power imbalance in favour of managers.

In fact, managers are disproportionately not held accountable when complaints are raised, or incidents involving harm to a staff member come to the attention of senior management. This, alone, should be setting off alarm bells. In fact, I know of no instance of a manager being held accountable. This may because of confidentiality concerns. But it also means that no complainant I am aware of has been told their case has been upheld, or that the manager has been ‘spoken to’.

In fact, an instance where a staff member with disability took their public sector employer to the Human Rights Commission after sustained bullying did not lead to any known disciplinary action concerning the manager responsible, even when the complaint was upheld. The employee reported that bullying continued after the hearing. It took an intervention by senior executives to relocate the staff member away from the bully. The bully, who exhibited, in my view, clear psychopathic traits, remained unrestrained in their conduct, and unchastised. Why was that?

Conclusion

I was bullied at school. I was a tall skinny kid. I didn’t like fights for real, so I avoided them. But when my back was pushed to a wall, I could, and did, give out worse than I got. I did a lot of play fighting with friends heavier and stronger than me.

I have been bullied at work too – before and after I acquired a disability. I have been managed by psychopaths of the moderate variety who have tried to give me a hard time. Sometimes they succeed, but mostly not. I have come away bruised, but not battered the way I have seen my colleagues with disability suffer. I know the damage done. It endures for years.

It is recognised that there is a higher concentration of psychopaths in management, and the higher one goes, the greater the concentration. Maybe this explains why, despite protestations of concern, flagrantly cruel and unemphatic managers are very rarely held to account, while their victims take ‘stress leave’, are ‘managed out’, medically retired, quit, or grimly endure because there is no other viable option. Some abusers are promoted. And they are often the worst.

A few years ago, I was talking to a colleague about a manager, under whom a friend worked for a brief time. I knew my colleague had come from the same business area and I was curious to check out my friend’s description of the manager, which was so extreme I suspected strong personal bias. I have a substantial background in complaints investigation, and I had long learned to be wary of strong negative descriptions of people. I’d rarely come across an instance of the characterisation matching my experience of the person.

The look on my colleague’s face was a fair signal of what was to come. Of that manager he said that they were ‘the maddest and most dangerous person I have ever known’. Even after blatant abuse of staff that amounted to intentional persecution, involving alleged lying and fabrication of evidence in an effort to have a staff member sacked, the department did finally transfer the manager and reportedly stripped them of any right to be a manager in future. That’s mild ‘punishment’ for sustained serious misconduct. I am familiar with the specifics of this instance, so it’s not hearsay.

More recently I know, from totally reliable sources (close friends, family, and former colleagues), of conduct that fits a description of psychopathy in the NSW government agencies. One resigned because the manager’s conduct became so toxic, his psychological health became at risk. Another resigned after it became apparent there was action afoot to have her sacked by alleging corrupt conduct and potentially destroying her reputation. Another survived because I was involved in providing support.

I cannot stress enough that psychopathic managers are real and continue to do real harm to individual staff and to WorkCover premiums. I know of the injury to staff with disability first- hand because I have been directly involved in interventions. I believe reports that vulnerable people from other ‘diversity’ groups are equally impacted – because they come from staff with disability who know what they are going through.

There’s something called the 80:20 rule – e.g. 80% of crime is caused by 20% of the population. Go back to Body’s figures – 17% of managers perpetrate 76% of bullying. It’s a good fit for the rule. We act to prevent and respond to crime in our community, better than we police bullying and its associated abuses in our government agencies. That’s not okay. 

The issue isn’t that there is a plague of full-blown psychopaths in the public sector. There isn’t. But there are enough on the moderate to severe side of the spectrum to give good cause for concern. Even one staff member with disability subject to the machinations of a manger whose conduct is psychopathic is not okay. Worse, you can be assured they are not the only one suffering. 

The question I keep returning to is: “Why, in the face of evidence of psychopathic managers causing harm to staff with disability (and others), do the agency’s leaders not act with clarity and intent to put a stop to the abuse and harm?”

As I write this, I can hear the cheers of the victims of these managers, who read my blog. The most common comment I get is “It’s like you are telling my story.” I am. 

Please read, or listen to, Taming Toxic People. It provides an accessible introduction to a much-neglected theme that is the source of so much pain.

A friend has been aching over the word ‘disability’. He has a degenerative medical condition that confers a variety of impediments to living a ‘normal’ life. He helpfully recited a dictionary definition of normal – “(of a person) physically and mentally healthy” – and “the usual, typical, or expected state or condition.”

His point was that we run these two definitions together – and have built our world around it. His medical condition dictates his normal. Then he makes an interesting point. He is not ‘disabled’ in his normal state. It is a pertinent point. The ‘normal’ human condition does not include an ability to fly, but humans are not, therefore, disabled.

This has led to a social idea of disability – that our human-made environment creates barriers. We can and should remove them to give equal access to our common domain.

While this is a powerful idea about inclusion and equity, my friend worries that the term ‘disability’ in this context is too limiting. He does not want to be defined in terms of disability.

This is a good point. It’s been the direction I have been meandering in. He’s just more adamant on the point.

A Word Beyond Is Use By Date?

Disability, as an idea, has been evolving, slowly. Recently I was watching a program on the Kennedy family in the US. The patriarch was determined that a son would rise to be President, but a daughter, born with an unspecified disability, was thought to be an impediment to that aspiration. She reflected poorly upon the family. This was in the 1950s. One blemished sibling could mark a whole family with the taint of abnormality.

We have come a long way in many respects, and not so far in others. Putting away people born with disability is no longer something we countenance. But a lack of public visibility still tells us that being in the shared domain is still not part of the normal for many people with disability.

Words acquire meanings which prevail for a time as useful tools to convey ideas. Then the meaning can change, and the usefulness of the word decline. I have been wrestling with why Disability Inclusion is taking so long in settings where there should be a compelling moral and legal imperative that would ideally make the change urgent. Language seems to matter a great deal. For me, ‘person with disability’ is better than ‘disabled person’. My friend asked: “Why not simply say person?” Good question.

We can say that a person (with disability) benefits from (Disability) Inclusion strategies. How would the meaning of that statement change if we lost the words in brackets? What would be diminished?

I want to suggest that far from losing something in the translation, we would gain far more. This is the logic of Inclusive or Universal Design – design for everyone.

Now here’s a paradox – of sorts. I have argued that disability is my lens that creates a fine focus on a wider concern for inclusion. It can detail a particular dimension of suffering through exclusion more effectively than a general assertion. This is usual. There is an abundance of such lens in our community. But many lack clarity and efficacy as simulants to change. 

We can’t surrender disability as a lens. But we have to be canny about how we apply it. Can we leave disability behind and still carry it with us?

Is Disability Working Well?

An empathy trigger should excite an immediate response when it is working well. I have been focusing on areas where staff with disability remain subject to unempathic and even cruel conduct despite shifts in organisational culture and values. What’s not working here speaks volumes.

These sticking points are corrosive because they are never secret for long. Once word gets out, and there is no effective and timely effort to sort out the concern, there is an unmistakable message sent about the organisation’s leadership culture. That message is that it has an appetite for abuse of vulnerable staff. It may not be a big appetite, but it becomes a strong headwind against which positive change agents must continually push. 

What is the Question?

For 3 years, starting in early 2002, I struggled to frame the research question for my Masters Honours thesis. I had the theme and the passion, but a coherent question eluded me. I tried forcing efforts to conform, but they broke down constantly. I contemplated quitting many times. It took serendipity to rescue me, and when the question finally came, it opened a floodgate. Since then, I have come to understand that often the greatest impediment to success comes from asking the wrong question.

What is the goal of Disability Inclusion? Is it to help people with disability to be included? Is it to help people become more inclusive, so people with disability don’t have a problem being included? They are not two forms of the same question, but two related, yet distinct, questions. For one, the lens is held up like a battle standard. For the other, the lens is carried in the back pocket, and used judiciously.

Both questions have value. Both require responses. But method and language are different for each.

I am not advocating for either approach, rather for clarity in which ever approach is elected. Both must be in play, I believe, because the Disability Inclusion cause must evolve from one to the other, in terms of which is dominant – for now, both are required.

The Butterfly Effect

In the late 1990s I was fascinated by Chaos and Complexity Theories. The idea of a butterfly flapping its wings in one part of the world causing a storm in another part of the world has become a witless cliché.

But, there’s a deep truth radiating beneath the glib and careless fog of casual reference to a thing not really understood. 

The anthropologist, Margaret Mead is claimed to have said “Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it’s the only thing that ever has.” This may be the most famous quote never actually uttered by the person to whom it has been attributed.

It is famous because it is mostly true – a small group of thoughtful committed individuals can change the world. It happens all the time, daily, in fact – for good and ill. Such small groups do not function in isolation. The quote does not say “alone”.

Conclusion

The most potent butterflies flap their wings with clarity of intent. Butterflies with disability can generate change more effectively if they are motivated by deeper understanding of disability. My friend’s questioning of whether the word remains useful is, itself, useful.

He asks us to examine what has become normal, and reflect on whether this serves our needs, or whether we should progress to a more useful tool.

The cliched butterfly creates a storm, But why not also a blissful summer’s day? The cliched butterfly had no intent known. The mere mechanics of action and evolving reaction are what excite our imagination. Would clarity of purpose and intent change the consequence?

As I start writing its 20:48 on Friday evening, December 3^rd, 2021. I have never put much store by the annual IDPWD (International Day of People with Disability) on a personal level. There was always work to be done. But today unfolded in a strangely beautiful way.

I stared off listening to Elaine Pagels’ Why Religion? I usually listen to audiobooks because my grip impairment makes holding books no longer a sensual pleasure. Kindle is my next best option. But this time I had to import audio CDs from the USA and transfer their content to my iPhone.

Why Religion? is a deeply personal account of seeking sense midst grief and loss. That’s something we will likely experience in our lives. It is particularly pertinent to acquiring a catastrophic disability – but it is rarely acknowledged. The psychological impact of sudden and profound disability is buried beneath the cheery heroic facade that is much preferred as the public face of disability.

I listened as I sipped a coffee brought from home, in my car, parked at a lookout at Katoomba with a view of Mt Solitary. When I paused to reflect, I heard the wind and the calls of bush birds.

At 9.30 I had a Teams hook up with Anne Skewes, the passionate and clear-headed DEN Executive Champion I first encountered as DEN Chair. Back then she was Deputy Secretary of the Land and Housing Corporation, which was inside Family and Community Services. Anne’s clarity and strength, her compassion and passion were so foundational to the DEN’s success. The fact that we continue to talk is a testimony to her ongoing commitment to personal authenticity. It’s a rare honour for such a relationship to endure. 

After that I watched a video featuring DCJ’s current fulltime DEN Chair, Jacqui Duncan and John Hubby, DCJ Deputy Secretary, Corporate Services,  and Inclusion Champion. They were talking as part of PurpleSpace’s global Leader to Leader conversations. I know both, so I know the conversation was genuine. The fact it is public helps dissolve the mistrust so often directed at senior leadership by staff with disability. There’s work yet to be done, but this continues the laying of an essential foundation.

Earlier, I had been forwarded an email from DCJ’s Acting Secretary, Catherine D’Elia, sent out this morning to celebrate IDPWD. Among other things, Catherine urged participation in the DEN’s last formal meeting for the year, on the 8^th of December. She also wrote: “The DEN does fantastic work by initiating and assisting in the development of plans, policies and procedures that impact on staff with disability”.

The Board has been a powerful supporter of the DEN, and that acknowledgement and support has given many staff with disability the confidence to reach out to the DEN. A few years ago, whenever the then Secretary, Michael Coutts-Trotter, supported the DEN in all-staff emails, there was a surge in membership.

COVID has brought the DEN an unexpected blessing. When I was chair, I was happy with 35 people turning up to meetings – in person and via video conferencing. Now the Secretary can urge a whole department to participate in a Microsoft Teams based meeting. I used to think 35 was good. Now 135 would almost seem like the meeting was poorly attended.

Jacqui Duncan has added a finesse to the DEN Chair role, and she is wonderfully aided and abetted by Sharon Bennett as Deputy Chair Communications. Sharon adds a skill in communications and presentation that lifts the DEN profile to a level I could have only dreamed of. That talent was on display today.

The DEN has become a remarkable influence within DCJ, and that is down to the passion and commitment of the other 2 Deputy Chairs and the rest of the Guidance and Action Team (GAT). I was particularly pleased to see, in one of Sharon’s communiques, long time GAT member, Andrew Lapham adding his voice to promote celebration of IDPWD. Andrew rose to what I understand as now global fame through the ABC’s Love on the Spectrum. He has been a steady and effective voice for Disability Inclusion in Newcastle for a few years now.

At 11:30 I tuned into an event run by the Public Service Commission in collaboration with DEN Connect. It was a good hour of staff with disability sharing their perspectives on what is the potential for Disability Inclusion in the NSW public sector. We now must convince decision makers to listen, and respond.

I was forwarded an email from Michael Coutts-Trotter, now Secretary of NSW Premier and Cabinet. Michael had spoken to the whole sector about the importance of Disability Inclusion, and he had quoted from my blog, referring to me as “a former colleague with disability.” I’ll take that as a deep compliment. It made my day. He could have added my blog link, but, you know, I’ll let that slide past.

I spent the rest of the day finishing off a submission to the Disability Royal Commission. On Wednesday I listened to a personal presentation by a person who works with the Royal Commission. I reached out to him afterwards to see if I could have a conversation. He acquired a catastrophic disability a few years back that put him in a wheelchair as a permanent mode of getting around. He had also a background in theology, which interested me because it suggested maybe a sophisticated reflection on going through such a life changing experience. 

I want to write on that at a fairly deep level, so it means talking with people who have developed a habit of deeper inquiry, and who have a capacity for measured reflection.

The upshot was that he looked at my blog and suggested I might submit something on the theme of Disability Inclusion – which is part of the Royal Commission’s brief.

This I did, just before 17:00 this afternoon. 

It’s now 22:35 – because I type slowly. It has been a remarkable day. And most unexpected.

Introduction

I was asked to write something on ‘disability community’. I decided to add ‘identity’ as well.

I struggle with both notions as the basis for a discourse, but I acknowledge that there is something to them. How to engage with them in a useful way is something worth exploring.

I will discuss identity first, because it seems that it would be a necessary precondition for community.

Identity

I identify as a person with disability because it is evident that I have a disability, and because of that I will say “I am the tall guy with the blue crutches.” I probably don’t need to say “tall”, but I do. Both things are part of my identity.

My disability, and the experience of acquiring it, has transformed me over the past 13 years. I am who I am because it. While the physical side of the disability has seriously sucked, it has wrought spiritual alchemy upon me. I think I am a better person because of it.

I am intentional about saying ‘person with disability’ rather than ‘disabled person’. What is the nature of ‘person’ such that it can be disabled? One thing I think most people with a physical disability know is that they are not their body.

A few years back, before the NDIS was introduced the NSW Department of Ageing Disability & Home Care embarked on ‘person-centred’ service/support/ care philosophy for people with disability. To the extent that a person can be disabled, I imagined that might be through a psychological disability. But here I have problem with distinction between a disability and being disabled.

To me ‘disabled’ has a global sense of finality about it. This may be a cultural prejudice. I am used to reading of boats that were disabled – something that makes them completely non-functional. This is the problem with adjectives – they come to define the noun – person. 

Being person with disability puts the person first, and it makes the disability an accompanying attribute, not a defining one. So, I am not going to allow that a psychological disability meets the adjectival character of disablement. I have friends with psychological disability, and they are not defined by it – or disabled by it. They are functioning persons. Whatever ‘person’ is, I do not believe it can be disabled. But it can acquire an attribute – a disability.

In these days when identity politics can be a minefield, I want to be clear that the politics of disability inclusion has nothing to do with identity – for me. Inclusion is a common human need, and the challenge I see has a disability focus – for me. Disability is my lens. I am true to the ‘motto’ of Inclusive Design – Solve for one, extend to many.

So, in sum, disability is a component of my identity. It is part of what makes me who I am. It does not define who I am. As I have written elsewhere, I believe disability is something we all experience, and are influenced by in some measure.

Community

This is tricky. Community is such a complex word these days. Where there are two, or more, of us gathered, there is community, albeit in embryonic form often.

Community is grounded in shared experience. There was a time when that shared experience included spatial proximity as the most substantial attribute. That’s no longer the case, courtesy of social media and greater mobility.

I grew up, for a time, in small rural town in western Victoria. It was a community that shared the spatial experience of living in and around that town. But it was internally diverse; and yet it functioned as whole because of a mixture of laws (federal, state and local) and cultural norms. One community contained many smaller ones. And the smaller ones shared members with each other.  But back then, we would not have used the word ‘community’ for the subsets.

Communities can be formed by shared experience that is profound and transformative. Veterans of military service have a shared experience because they begin in the community of their military unit, and then went to war together. The same is true of police, fire fighters, emergency services and others. Danger and trauma can create powerful bonds that are incomprehensible to those who have no experience of either.

The contemporary sense of community that is based disability is subtle. The experience is grounded in individual experience, and the bonds that make a community are where individual experiences intersect.

A few years ago, I set up consultations between staff with disability and my agency’s IT team. I ran separate consults with vision impaired and hearing impaired staff. There was a clear sense of shared experience as the staff in each group told of their experiences. It was the first time they had come together as a group with a specific type of disability being the qualifying attribute.

It was interesting to see that shared experience of a specific type of disability created a sense of community because of the common experience of exclusion to a greater extent than the shared experience of disability.

I have shared stories with colleagues who have disabilities impacting our mobility. They are bonding stories. They build connections. There are personal stories of an intimate nature that are shared only when trust and respect have been established.

The other shared experience is exclusion and inaccessibility, blended with discrimination that can be abusive, or verbal or written affirmations of care and support that don’t amount to anything – without determined advocacy. These are shared more readily, because the experience is public.

These experiences build Disability Employee Networks (DENs). In the spirit of my thoughts on identity, I want to think of these as Inclusion Communities. In fact, If In could go back in time, I would change DEN to DIN – Disability Inclusion Network.  It’s not just people with disability who belong to this sense of community. The public experience of exclusion means that everybody (including witnesses and perpetrators) are potentially members as well – if they self-identify.

The building of a sense of community predicated on what denied, but what should be given, is something I am okay with. Disability is the focus because that is the shared attribute (experienced or witnessed). Inclusion is the goal. Network is the means.

I see myself as a member of a ‘disability community’ in two senses:

1. A shared experience of personal challenge conferred by the disability. It is hard and it is sometimes painful. Last week I was getting my crutches out of the back of my car in an accessible parking spot, and I caught the eye of a woman getting her wheely walker out of her car boot. We looked at each other and nodded. Yeah. This is shit. Then we smiled. But its our life. Just because we don’t winge doesn’t mean we are having fun.
2. I have been lucky in the inclusion stakes. I have had trouble with people who would have been unpleasant regardless. I am 185cms tall and I am used to standing up for myself. But the reality I live in is astonishingly inaccessible and non-inclusive. There are a lot of people with disability who do not have my confidence. And because I know that disability inclusion will benefit everyone, I am happy to be a member of the disability inclusion community.

Conclusion

Identity and community are powerful and important ideas that can become debased and trashed in the current political climate, where there is a lot of passion and intemperate expression of views.

Inclusion is difficult for many reasons that I cover in this blog. Intemperate emotions and poorly thought through arguments do not advance the cause. And even when emotions triggered by genuine pain and frustrations might be justly expressed, the harsh reality is that they turn the focus away from the causes of the exclusion – and put it on the complainant. That makes us the problem. Making inclusion real is hard enough without giving an excuse to deflect attention from the real problem.

Patient, persistent and polite is necessary. If we can express identity and community in terms that include those whose ideas, feelings and conduct we want to change, we will succeed. A well-grounded sense of identity and community can be the most powerful foundation for change we can develop. We can use identity and community to divide – or to unite.

If we want inclusion, we must be inclusive.

A Reflection on why something that should be easy isn’t

Introduction

There are few public sector senior leaders for whom I have developed great respect over the years I have worked in government agencies – Commonwealth and NSW. I was fortunate that in my last department I needed two hands to count them.

One thing that distinguishes them all is what I call compassionate clarity. They have no tolerance for unkindness. They are not criticisers or punishers in response to conduct they consider unbecoming of a staff member, especially a leader. They act swiftly and firmly, and with clarity to address the matter. They do it in a kind way too.

Here’s a quote from a recent email from one such senior leader:

We have come some of the way, in terms of achieving a culture where reasonable adjustment is no big deal, but there are still a lot of gaps. It is the manager’s job to ask the questions about adjustment. It shouldn’t always be up to the employee with disability or illness … and as I have said 1000 times, the conversation is not as hard as people think, once the manager has the courage/decency get it started.

So, What’s The Problem?

Why is it that some managers can’t find “the courage/decency” to talk to staff member with disability?

Sometimes it is no more complex than the fact that they do not know what to say, or how to say it. This is because they have had zero exposure to disability – at an intimate level.

It can be daunting to start from a position of utter ignorance. And often the person with disability is no help either. They may have no confidence they will be heard, understood, or treated well. So, even with 2 people with the best of intentions there can still be a struggle.

What is also true is that some managers are incurious and lack the interpersonal skills and feeling to act in a compassionate and respectful manner. They are great on the task stuff, but lousy on the human stuff. I have met many over the years.

They are not unpleasant people. They are not uncaring. They just don’t do empathy outside their personal intimate circles of family and friends. However, while what they do on a personal level is fine, as a manager/leader in a contemporary public sector agency or major business empathy is pretty much a job requirement.

They should know that, and they should be self-motivated enough to adapt. Hence it is fair to say that what they need is “the courage/decency” to act. It’s part of their job. It’s not the optional extra many think it is.

How to Help

One thing that became evident to me over the past 5 years was that the leaders I admired were selected, supervised, or influenced by leaders I admired. Now and then they seemed to be in isolation, but mostly not. There was often a culture of quality leadership.

But even in that culture the incurious and unempathic leader could exist and survive. It’s not hard to make the right sounds and appear to be curious and empathic.

Quality leaders are self-examining, self-aware individuals who model those attributes. These are noticed and emulated by others who aspire to be quality leaders. And this is where things start to break down. They are noticed and mimicked, but not adopted, by those who do not aspire – and this is either not noticed or not considered to be a problem.

The uncurious and unempathic are not challenged sufficiently to motivate them to act. And this is a serious problem.

Demands on managers have changed over recent decades as staff are acknowledged to have entitlements to safety and wellbeing under legal and policy force. But the insights and skills needed to respond to these new obligations have not been emphasised to the same degree. Rather they are still considered to be second to operational requirements – and hence optional and non-critical.

A brief historical perspective is necessary here. At the beginning of the industrial age workers were considered disposable fragile components of a process. If they wore out or broke, they were replaced. 

The industrial scale conflict of World War 1 frequently involved committing thousands of troops in a single action with little care for the number killed. They were disposable. It is claimed that in the 4 years and 3 months or so of WW1 9 million troops died – 6,000 a day.

The idea that staff are disposable has been changing slowly over the past century. Now we have reached the point where staff are valued for their humanity, and not solely their utility. The commitment to disability employment is a powerful expression of this new value.

In the language of popular economic thought, we are in a service and knowledge economy. Bu our technology has not yet advanced to the stage where AI and robotics can take over the roles played by humans.

In the public sector, human employees are the critical tools, without which the services necessary to our collective wellbeing could not be delivered. There’s a clue in the new language being used. We are moving from ‘workforce’ to ‘human capital’.

In days gone by a manager would have been sacked if the plant and machinery they were responsible for broke down or had to be replaced for lack of maintenance and repair. If workers were injured or killed that was less important.

Now the staff are vital components – the ‘tools’ of a knowledge and service system. It will be this way until AI and robots evolve way more.

I am labouring this point because it seems to be poorly understood. Agencies are understanding that looking after staff wellbeing and welfare is critical. The obligations are as much about preserving the ‘talent’ acquired through recruitment as they are moral. We can assume that using the term ‘talent’ is just another instance of the HR industry’s inflation of its importance – or we can assume it is a genuine case of seeking talented people with the knowledge and skills needed. And they must be cared for when they are found and hired.

Essentially, these days, if you are not a ‘people person’ you shouldn’t be in management/leadership roles. But we know there are people who are not ‘people people’in these roles.

We need to help them become people people – or find something else to do. If we can do this, we can help them, and the staff they can’t help.

What Next?

This is the hard bit. In a perfect and theoretical world, the management and leadership hierarchy would be actively engaging in upgrading skills that generate greater self-awareness and empathy; encouraging managers and executives to devote some of their own time to self-directed professional development; and identifying current non-people people in management and leadership roles for priority support to make them progressively less and less dangerous to the staff for whose welfare they have responsibility.

In the real world that’s not likely to happen any time soon without a concerted effort. It’s not that the problem isn’t known, rather that it’s not known sufficiently widely.

For example, in NSW, the Public Service Commission created the Age of Inclusion Campaign in 2020 aimed at promoting disability employment. And yet the biggest problem impacting retention of staff with disability (incurious and unempathic managers) – and what to do about it – was not mentioned at all. It was if the problem did not exist to the people who conceived, designed, and approved the campaign. This is not going to get the state to its laudable goal of having a “world class public service” any time soon https://www.nsw.gov.au/premiers-priorities/world-class-public-service.

Introduction

Here’s a story from a few years back. I have permission from the DEN member to tell it. Her name is Pam. 

Pam works on a helpline in Liverpool. She has one leg and relies on Canadian crutches for mobility.  The Department had organised for the construction of an accessible toilet to be built over an accessible parking spot. It solved a problem, for which staff with disability were grateful. But the accessible parking spot was not replaced; and exacerbated an existing problem with parking. 

You Can’t Park Here

Pam says: At the time we had 3 designated car spaces. They built a toilet in the basement and took 1 of our disabled car spaces and did not replace them with suitable parking. There was not enough parking for staff with a disability. Because I started my shift in the afternoon it was usually me that missed out on parking. 

Most times I had to park in the visitor car park (if parking was available) it was on a slope and was really small. This made it really difficult for me to get in and out of my car. 

There was a lot more contractors and couriers coming and going and they had nowhere to park. The visitor car park was too small and it was difficult for them to unload their deliveries so many of them would park in designated disabled parking. 

There was one courier that would arrive just before me and he always parked in the disabled parking. He continued to do this even though I had asked him many times not to do that.

The Need for Intervention

Pam had tried repeatedly to have the accessible parking spots reserved only for people who needed the accessibility feature. She was not successful and contacted me. I contacted the Executive Director for the helplines. She was very receptive to the matter and promptly arranged a meeting with Pam her colleagues with disability.

As Pam says: Claire came out and spoke to staff with disabilities. As a result we were allocated 2 suitable accessible parking spots and they started to monitor who was parking in them.

The fuller story is that Claire set up a meeting with the managers and directors from the helplines, property areas, and the building manager. I was invited to attend via phone

This is what happened. All contractors and suppliers were warned against parking in accessible parking spots as they entered the building’s garage. Any commercial relationship with the helplines would be at risk if they did not comply. New signs were placed at the accessible parking spots warning staff who did not require them that they would lose access to the parking station if they parked in them. A new accessible parking spot was made to replace the one lost to the accessible toilet.  The meeting also realised there were a few other issues unrelated to disability it could address as well. It was a very productive meeting.

Problem solved. Pam and colleagues with disability could use the accessible spots without impediment from vehicles that should not be in them. 

Great Leadership

This is an example of what happens when careless and insensitive management meets great leadership: 

1. The senior leader listened to me and understood the situation was not okay. 
2. She promptly met with Pam and her colleagues to get the facts firsthand. 
3. She called a meeting of the key decision makers who then decided what had to be done, made it happen and ensured the decision stuck. 

I don’t know what was said to the manager who did not understand that making this happen was their job. I am, however, confident that a conversation was had. That’s what a great leader would have done – and this was great leadership. 

What Went Wrong

I want to reflect a bit on what went wrong; because this is commonplace, sadly. 

Pause a moment and imagine the mindset of a manager who elects not to understand that an accessible parking spot is for people who need it because of their disability. There is a staff member with one leg and another who uses a walking frame – and still the idea that the parking spots designed for people with disabilities should be used by them doesn’t seem appealing.

Why, exactly, should a one-legged staff member have to seek assistance to obtain something that should be provided without hesitation? What was the manager who declined the request thinking? Clearly, they thought that it was okay to refuse to ensure that accessible parking spots were reserved for people who benefitted from the accessible features, and the proximity to the main entrance. 

Either they did not know, or they believed they were free to choose not to comply with legal and policy requirements. Pam’s request did not trigger an inquiry by the manager about what, if any, latitude they had. It’s difficult not to assume they chose to believe they could ignore the request and continue to place staff at risk of injury.

In contrast, great leadership saw immediately what the right thing to do was – and made it happen. But it is what competent leadership should have done – and what Pam dealt with wasn’t even that.

Conclusion

It is a sorry day when a leader just doing their job with clarity and facility is celebrated as providing “great leadership”. But the truth is that it is rare to witness. It may happen more often behind the scenes, but it should open (subject to confidentiality requirements), so staff can have confidence it is going on. 

It so stands out above the insensitivity and inertia of poor management and leadership it should be highlighted and cheered – especially if you are a staff member with disability whose work experience is improved by it.

Footnote 1

There is an unhappy footnote to this story. The accessible toilet was used by staff who had no need of its accessibility features, forcing those who do to wait, often for an extended time (time flies when you are sitting in a cubicle with a mobile phone). Requests to have the accessible toilet reserved for those who need it were ignored. 

Pam says: There were also issues with trying to access the disabled toilet. There was only one disabled toilet on the floor and many times able bodied staff would use the toilet while people with disabilities had to wait outside.

Not only were her requests ignored; she got into strife with her manager when she asked her colleagues not to use the accessible toilet. Pam has shown me notes and emails, and it is astonishing that such a level of insensitivity can be shown by managers.

Disabilities can impact bowel and bladder control, and the need to access a toilet can be sudden and reasonably urgent. People with disability who need the features of an accessible toilet tend to understand this. This risk of an accessible toilet being less available to those who need it, when they need it, is exacerbated by the popularity of people taking their mobile phones with them. It is not uncommon for a ‘sit down’ to take 20 minutes, sometimes more.

But this matter wasn’t raised at the time the parking issue was addressed. As good as great leadership is, it can do nothing if a matter is not drawn to their attention.

The toilet issue persisted well after the parking was addressed. The situation was, and is, in need of great leadership.

Footnote 2

I sent my draft to Pam for checking. She said I could quote her response in full. Here it is:

Hi Michael

I think it’s great and expresses the way I feel about living in a society that only seems to see the disability and ignores the person. 

 Many companies acknowledge that the person has a disability but they don’t want to do anything to assist in “providing a level playing field”  

They like to “mouth off” about how wonderful they are and they have policies but never follow them. 

Training staff and policies mean nothing if they are not implemented. I always say that it’s not only knowledge’s that is power. It’s the application of knowledge that counts.

Beautifully written.

Regards

Pam

Introduction

On 19 November, a friend sent me a link to an ABC story taken from the ABC television show Q&A. It’s not a show I am a fan of. The story concerned a young woman with epilepsy who was sent home after experiencing a seizure at work – and was required, subsequently, to work at home. He wanted to know what I thought.

In my reply to my friend, I made an assumption that the employer was a public sector agency. I did this to frame my response in a hypothetical understanding of the context. The story provided no context, no details. 

What’s the Story?

A person with disability (epilepsy) is obliged to work from home by an unknown employer for reasons that are not known – beyond the fact that “she fell off her chair at work as a result of a seizure.” We are induced to believe that having a seizure at work is enough to trigger a requirement that the person works from home on an ongoing basis. But is that true? You won’t get that information from the article. Why not? Surely good journalism would require that?

So, for sure, a staff member with disability who prefers to be in the workplace will not be happy to be obliged to work from home. But was the decision to require her to work from home unreasonable or unfair? I don’t know the answer. But the ABC story is written such that the assumption of unfairness must be arrived at. It was unfair and discriminatory, we are told.

From the article we read that the host of Q+A asked the mother “if the workplace had given a medical justification for this position“? 

The mother said: “There’s been three reports from my daughter’s psychologist and at the moment we’re awaiting the final one and the employer will make a decision,“

Then the article goes on with the following: “Disability advocate and musician Ms Hull levelled an accusation at the unnamed employer. “I see that as discrimination,” she said. “Just purely discrimination. She should be allowed to work there.”

There is more, but the damage has been done. Let me sum up the facts here. A young woman with epilepsy had a seizure at work and fell off her chair. The unknown employer required her to work from home for an unspecified period. During this time there have been 3 psychology reports prepared, and a third one pending before the employer makes a final decision – about what is unknown – but we may assume it is whether it is safe for the employee to return to the workplace and under what conditions.

The article opens with: “The reality for workers with a disability during the COVID pandemic was laid bare in Q +A in a case that panellist Eliza Hull labelled “pure discrimination”.”

For the ‘disability advocate’, Lisa Hull to call this “pure discrimination” is outrageous. For me this shows a lack of knowledge and tact that gives disability advocacy a bad name.

The employer has duty of care to ensure that their workplace is safe. While there are adjustments that might make a workplace safer for a person with epilepsy, if a person is at risk, no matter where they are in the workplace, adjustments may not be sufficient or reasonably affordable. The term ‘reasonable’ in reasonable adjustment refers to the cost imposed on an employer in making an adjustment.

The article described Ms Hull as a “musician”, which may suggest she is not familiar with office environments.

This is what I told my friend in an email.

In this case, what’s the agency’s response? It could simply be that there are too few staff working in the office to assure there is support due to COVID restrictions. 

Return to office is staged, with far reduced staff. It would be reasonable to believe that in the event of the staff member having a seizure, there would not be staff in that area to be alerted and to provide assistance.

Offices can be dangerous places if there is a high risk of a seizure and the person is not wearing a helmet to minimise risk of head injury. Is the woman using medication to control seizures?

A regular office has an abundance of hard and sharp edges. Anybody who falls 

may risk serious injury, even with the reflexes to avoid the worst. Because of my disability I am vulnerable to falls. I have had 4 in the past 12 months – but at home. I fall because my ankles don’t work, and the slightest trigger is enough to send me toppling. I wouldn’t want to fall in an office.

To what extent is she taking care to reduce the risk of injury – as is required under WHS legislation?

This is not an accusation. The employer must affirm the person is safety conscious and is aware of risks. None of this is covered.

The short answer is that we do not know answers to key questions, and despite of our ignorance we are invited to believe that this unnamed employer is at fault. It may be, but no evidence that it is was provided.

The allegation that the employer is engaging in “pure discrimination” is unfounded and reckless. 

There’s another dimension to the story that raises a warning flag of unexpressed complexity for me.

“While many Australians may crave more flexible working arrangements, audience member Lisa Burns raised fears for her daughter, who has epilepsy, and has become further isolated from the world due to her workplace labelling her an OH&S risk.”

Saying her daughter “has become further isolated from the world” suggests a deeper dimension to the story. The mother goes on to say: “She no longer takes public transport and she doesn’t chat with her co-workers.” And then she adds: “She sits on the couch at home and works.” 

The experience of isolation from co-workers is something some of my former colleagues with disability are concerned about when they work from home, It’s a real concern. But it’s the sense of being “further” isolated that concerns me. I am not sure what to make of working from a couch, given the ergonomic implications. 

Something Doesn’t Add Up

I suspect there is far more to this story than this 520 odd word article allows. 

Two things bother me about this story.

1. It makes out that a person with disability is a victim of unfair treatment – based entirely on the report that the mother of the person who is the focus of the story is unhappy about a decision made. We can all sympathise with this. But there is not the slightest shred of evidence that the decision was unfair. There is no indication that working from home is a long-term or permanent solution. In fact, it may be that the employer assessed that the risk was such that the only other solution may have been place the young woman on leave – and working from home was the best available immediate option. There are concerns possible about the lack of contact with colleagues through Teams or Zoom. This could have to do with the workplace culture or insensitive management. There could be discrimination here – but there is no evidence to back up any such claim.
2. The ‘disability advocate’ does no service to the role. Disability Advocacy is a difficult role. But it is frequently intemperate and one sided – and this is a sorry instance of this. Sometimes the intransigence of employers makes extreme action the last desperate resort. But an advocate making allegations about an unnamed employer reeks of an exercise in sensationalism and leaves me suspecting that the allegation is self-serving. Of course, it could also be that key elements of the story have been excised by the author of the piece.

But Wait, There’s More

After writing the above, I checked out the Q&A show – The Great Resignation. I wanted to initially just react to the article. The part relevant to the ABC article starts at 46 mins in. This is what you wouldn’t know from the article:

• The young woman has autism as well as epilepsy. (the mother said this)
• She developed seizures as a result of anxiety and stress (the mother said this)
• When the young woman fell from the chair, she hit her head. (the mother said this)
• The mother sees the matter ‘very driven by OHS’. The HR Department is supportive, but ‘OHS’ is resistant. (this sounds like a fair balance of concerns and nothing to do with discrimination at all)
• The family is still negotiating with the employer about return to the workplace. (So, it’s a temporary situation so far – pending subsequent decision)
• The mother is concerned “If she is told she can’t work sitting on a chair, where can she work?” That’s an unreasonable and over simplified characterisation of the risk and the situation. This issue isn’t sitting on a chair. It’s the risk of a sudden seizure anywhere in the office. 

The article left out the key fact of autism. This adds a vital context that makes sense of the mother’s statements. It may explain the concern the employer has re WHS – and why a psychological report was requested. There are multiple other questions that may be asked about how the employer is viewing the risk equation, but there is no detail to explore them here. 

The ‘disability advocate’ was accurately and fully reported. So, I stand by my original assessment.

I am confident that there is no prima facie case of discrimination – rather a properly protective response to what is a complex situation in which the employer has a clear legal responsibility as well as social one.

If I have a possible criticism of the employer, it might be that it could have communicated more effectively with the mother to ensure she understood why it was acting as it was. This would, I imagine, have been the duty of the HR contact – to give balanced advice of desires versus risks and duties. This may have been done, and the family did not understand, or accept, the explanation.

The journalism is sloppy, because it takes a simplistic and inaccurate line on a complex human problem that deserves truth and informed awareness, not sensationalism and moralising. The article excised a vital piece of information.

The article carries the line – Help keep family & friends informed by sharing this article. In fact, sharing this article will misinform.

Conclusion

Discrimination against workers with disability is real and can, and does, have serious harmful consequences. Working from home has proven to be both a blessing and a curse for people with disability, and we need to know the difference. Protecting the psychological well-being of staff with disability is an employer’s duty. But that duty does not extend to assuring; or guaranteeing well-being. The best an employer can do is address reasonably foreseeable risks.

Misrepresenting a complex situation in a way that also pushes against a non-optional legal liability of an employer to ensure that staff have a safe workplace does no good service to anybody.  To do this is ignorance, or is disingenuous and self-serving.

The right of people with disability to have equal access to employment cannot trump work health and safety considerations. A combination of autism and epilepsy, with seizures triggered by stress and anxiety, adds a dimension of risk that requires careful assessment. By agreeing to place this young woman in its workforce the employer (I think almost definitely a public sector agency) must reasonably act to secure her safety by making the workplace as safe as is reasonably possible. Contemporary workplace safety legislation also places responsibility upon employees to act in a safe manner. In this instance it’s a fair question to ask. In fact, a failure to ask the question about the employee’s capacity to act safely would be possibly negligent.

For a ‘disability advocate’ to call this situation “purely discrimination” is just plain wrong.

You can find the original article here:

https://www.abc.net.au/news/2021-11-18/discrimination-against-autistic-woman-alleged-on-qa-eliza-hull/100632968

The author of Why We Sleep (2018), Matthew Walker, is Professor of neuroscience and psychology at the University of California, Berkeley. He is a world authority on sleep.

Insufficient sleep can adversely impact a person with disability in multiple ways, including:

• Impairing performance at work, and in life generally, thus adding a burden to what may already be a challenging daily routine.
• Reducing opportunity for managers to stay abreast of policies in support of people with disability because:
  • Poor sleep reduces performance and leads a higher work volume because of reduced efficiency and effectiveness, leaving less time to read material often considered less important in any case – as its not core business related, and:
  • Reduces comprehension and recall of what is read.
• Insufficient sleep can make managers less empathic, responsive, and ethical in their conduct. So, not only are they less aware of their duties to be inclusive, they are less inclined to be so, as well. This applies to everybody, of course.
• People with disability can also be less inclined to stand up for their rights, and more inclined to endure non-inclusive and unempathic conduct.
• Insufficient sleep can exacerbate adverse health conditions by increasing risk of some (sometimes in surprising ways); and lowering the effectiveness of the immune system for others.
• Insufficient sleep can lead to the use of solutions that are either ineffective or dangerous (like sleeping tablets).

Walker says that sleep deprivation has become an epidemic in our culture because of lifestyle patterns, what and when we eat and drink, and the way we use tech like mobile phones, tablets, and computers.

If you are struggling to get through the day, or have difficulty getting to sleep, this book is a sobering opportunity to review what you are doing.

Sleep is fundamental to our lives, and yet we know so little of it. I bought the audiobook out of curiosity.

Now there’s a lot of things I am now going to do differently – or not all, or not so much.

Why We Sleep is exceptionally well written. I have the audiobook. It’s easy to listen to, though alarming at times when I am disabused of foolish notions and beliefs that are just plain wrong.

The book is readily available as an audiobook on Audible, as an ebook on Kindle, as a paperback, hardcover, or as an audio CD.

Introduction

As I start writing this I am acting as an advocate for a person with disability who is fearful of losing their job if their matter is progressed. 

I sent an email last night to a senior executive I know to be beyond doubt a person of the highest integrity. Even so, my client is filled with fear. So much so that overnight they sent me a text asking me to withdraw the email. I complied this morning, and sent an email advising the situation. I promptly got a reply with assurances there would be no risk to the client’s job. I forwarded that email to my client and the matter is proceeding. 

The Cause of Fear

Three cases come to mind from the past 3.5 years. In each the individual experienced conduct that can only be called cruel. Significant emotional pain was being inflicted through deeply insensitive conduct. The resultant distress had become intolerable. As DEN chair, I was asked to intervene. 

In one case the problem was more a cruel system than heartless people. The individual was stuck in a dilemma. They felt under pressure from management and HR, and under threat, to solve a problem that was not of their making. An impossible choice had to be made. The risk/threat of medical retirement was made evident.

I needed to detail the person’s experience of their dilemma and the impact it was having to a Deputy Secretary before the matter could be resolved. That resolution required executive action to accept, and act on, a simple solution. The solution required a decision, and an agreement, and both came from the senior executive. There was a lack of empathy and flexibility at lower levels of management.

A willingness to ‘follow procedure’, despite the pain that doing so was causing, was a disappointing attitude to encounter. The people who should have solved the problem, which wasn’t complex, did not consider the emotional welfare of the individual a priority. For them, procedure ruled, even when it was not fit for human(e) purpose. The clear head of a Deputy Secretary was needed to quickly address the problem.

I shouldn’t have needed to go that high, but it was clear that nobody below the Deputy Secretary was prepared to make an agreement and come to a decision. They would have let the staff member suffer, and even be subjected to medical retirement – as a solution to their problem. Two years later that staff member remains employed and free from impossible decisions. (I am not saying what the problem is to avoid giving hints to the identity of the staff member)

Another case was an instance of a manager functioning with their empathy button in the off position. This involved a work from home request before it was a thing (and that was not so long ago). Here the individual needed a sensitive and flexible accommodation to be able to continue to work while their disability was throwing up serious problems. 

There was a procedure that could be followed, but it was not well known. There was also a policy that was sympathetic to the situation, and which could have been applied in a sensitive manner. Instead, the manager went cold, ultra-clinical and minimalistic. Empathy was absent. The staff member was not engaged with as a human being going through an awful experience. That matter was resolved by involving people who were empathic. They were brought in from outside the workplace; and they had the authority to require, and the power to bring, empathy and compassion in the decision-making process.

Again, the risk/threat of medical retirement was made clear. Loss of employment would have been devastating.

In both these instances the staff member expressed genuine fear that going beyond their manager – and outside the immediate management environment – would lead to punishment. That fear included loss of their job by forcing medical retirement. 

The idea that a manager, or managers, would conspire to force a staff member into a medical retirement procedure should be utterly preposterous. But it’s not. A former colleague, and now friend, told his story of being subjected to persistent efforts to medically retire him to his agency’s board. He had to finally take his harassers (there is no other word for it) to the Human Rights Commission. He won his case and was awarded compensatory funds to cover his legal expenses. I helped him escape that profoundly toxic environment. He is now in a safe and respectful workplace where he is flourishing. And yet he is haunted by memories. PTSD is a real thing for staff who experience severe stress through being persecuted by managers trying to force them out of their roles. 

Job loss through management misconduct is real. Where the medical retirement ploy does not work, there’s the gaslighting and intimidation tactics that slowly exert negative emotional pressure which forces the individual to choose between their psychological well-being or remaining in their job. They can’t have both.

Being Diminished

The third case concerned an individual who had joined the agency at a low level because, despite their educational attainment, their disability was an impediment to obtaining a position at a higher grade. 

This staff member was routinely subjected to attitudes that plainly indicated that their competence was not acknowledged, even at their low grade. Their manager had made a connection between their disability and an imagined level of diminished competence, and then proceeded to seek to validate it.

Once again fear was instilled. This time the fear was that complaining about the manager’s conduct would trigger a move to remove the individual on grounds of incompetence. That fear was not based on any belief that such a move would be justified, but that it would happen if any effort to address the manager’s attitude was attempted.

A confidential approach to an Executive Director addressed the matter. The staff member was directly assured their job was safe, and the manager was spoken to concerning their approach. The situation is now much better. The presumption of incompetence has gone away, and local management is now much more supportive. In this case the Executive Director made it widely known that failure to treat staff with disability fairly would not be tolerated; and invited any staff member who had concerns to contact them directly.

The presumption of incompetence because of a disability is a remarkable form of discrimination. Incapacity in one respect can be seen to contaminate the whole person. When I returned to work after an 18-month absence, and with newly acquired disabilities affecting my mobility and my manual dexterity, I was quickly subjected to doubts about my intellectual competence. I felt I needed to work flat out to prove I was mentally competent. The fact that I had completed a thesis during my absence was not evidentiary, apparently. It was left unfinished when I fell ill, and I did a major rewrite as I was recoveirng.  I was slow, but only in a physical sense. It is depressing to see that you are considered incompetent because of your disability. It is corrosive and demeaning.

Fear as a Tactic

I feel a need to regularly remind the reader that I am not alleging the issues I raise are at epidemic levels, but they are endemic to public sector agencies by virtue of being an expression of human behaviour. Just one instance of instilling fear in an employee as a means of controlling against lodgement of complaint is unacceptable.

Staff with disability are especially vulnerable because alternative employment is hard to get – and you could end up in a worse situation. Threats of medical retirement, or harassment to force resignation, are stories told by staff with disability to an alarming degree. They go unreported because that’s the tactic. My former colleague stood up to his harassers, and now his case is a matter of public record. He secured the right to remain in his job, but his subsequent experience was so toxic, his psychological wellbeing was taken to the edge. In fact it was to such a degree that I precipitated an action to have him placed in another division. There he remains as a respected contributor, and considered well suitable for promotion. I will write his story soon. We discussed doing that today.

Medial retirement is an appropriate option for an agency to have. Some staff to get to the point where their disability sufficiently impairs their ability to perform the inherent requirements of the role they are in – but they could be redeployed into other roles where they can perform perfectly well. This is the case with people in front line roles who may be able to transition to ‘backroom’ roles after acquiring a disability. It is only when they are unable to meet the requirements of any available role, should medical retirement be invoked. However, staff with disability generally understand when they can’t continue, and voluntarily quit. There are, of course, circumstances when the situation requires firm action by the agency. 

Resignation due to disability is not uncommon. But the underlying reason for the resignation is almost never explored.

Pushing a staff member to quit through what amounts to bullying and harassment is a disgraceful practice. However, the cases I am aware of show that it is a polished practice supported by well-rehearsed defences, and abetted by lax, or complicit, supervisory management. Staff with disability are not the only victims. Not all disabilities can trigger forced medical retirement. Members of other ‘diversity groups’ experience this too.

The Least Worst Option

For a person with disability losing a job can be catastrophic, especially when that job loss is under a cloud of medical capability, or questions about competence. Its bad enough navigating the uncertain territory of seeking new employment, but without an ability to get a reference from one’s previous employer, that journey can become a frightening prospect.

Shutting up and enduring insult and abuse may be seen to be the best of a limited array of potentially catastrophic outcomes – until the adverse health consequences of constant psychological stress take their toll.

Some staff with disability are really tough. Their experience of living with a disability that generates daily challenges to just get through a normal day breeds a steely determination. Adding a toxic workplace with an abusive management culture to that daily grind of challenges creates a harmful burden no agency should countenance.

But breaking one’s silence is a traumatic prospect to contemplate. If the outcome is loss of employment. It can be better to ‘suck it up’ and endure.

Conclusion

Ernesto Sirolli wrote of “the sun of love and the water of respect” as the two things people are inherently entitled to. That applies to our workplaces as much as life in general. Without these, we wither, and eventually die. Even if our bodies remain animated, our spirts are desiccated. Sirolli writes on helping people set up business enterprises using an approach he called ‘facilitation’. He based this method on the principles of positive psychology, with the tag line – “as if people really matter.” This should be the unerring focus of all public (human) service agencies.

Those who are responsible for instilling Fear are, I believe, people who have a disability – which denies them the opportunity to be compassionate and empathic. This is why I cannot argue for a punitive remedy. But I do hold an agency’s management culture accountable to support or reassign managers whose conduct is abusive and damaging. The obligation is moral, as well as legal.

Staff with disability must be enabled to work free of abuse, and free from fear of catastrophic consequences if they report it, when it happens.