Month: December 2021

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.