Category: Uncategorized

Introduction

I have been reading some interesting material lately on how people think about Disability Inclusion and what motivates their actions. Some are born with their disability. Some acquire it while they are young. Others acquire their disabilities at various stages of adulthood. I was on the more mature side of the adult spectrum when I acquired my disabilities. 

One of the things about acquiring a significant disability later in life is that there’s a chance you might have some life experiences to draw on for the process of adapting and responding. 

In 2008 I contracted GBS and acquired mobility and grip disabilities. My ankles ceased functioning as they used to, and I required Canadian crutches to get around. I started off with a rollator – essentially a tray mobile with a seat but that was a nightmare on the train during my daily commute when I returned to work. 

I loved walking, reading and real-life problem solving. My past work experience was almost exclusively in the public sector (4 federal and 6 state agencies) – and most of that was about engaging with the public or the community. My roles were very people oriented (from intimate personal care to problem solving interviews to conflict resolution) Also a substantial portion of my work was disability related in some way. In my last agency I was initially employed as a Support Manager – coordinating health and community access services for residents of privately run accommodation services for people with disabilities. 

When I acquired my disability, I was developing and running tendering processes mostly to acquire disability accommodation services. A lot of what I had done previously involved monitoring and assessing performance of service providers and negotiating compliance or developing solutions. 

Walking used to be enjoyable but now is slow and perilous. I could still read but, because of my accompanying grip disabilities, I switched to ebooks and audiobooks. 

When I became a founding member of my department’s Disability Employee Network in July 2010 I was interested to discover that the majority of members were from the community disability support teams. These were people with disabilities whose jobs were working with people with disabilities in the community. They were engaged in practical problem solving. The advent of the NDIS saw the end of those jobs. By the time I became DEN Chair in November 2016 none of these members were left. 

In June 2023 I commenced a consultancy, working with staff network leads with my former employer. This was a novel experience, and I had to discover what made me a successful lead. While there are leadership skills that can be learned we all have a foundation of experiences and attitudes upon which we construct later philosophies and skills. It wasn’t a case of trying to make other people lead the way I did. I had experience as an effective leader but that didn’t necessarily mean I knew how to help others be effective leaders because of that experience. I had to quickly develop insight into myself and the leads I worked with. That was hard work. It was also deeply rewarding. 

I especially had to remember that other people didn’t necessarily see the world through my eyes – and hence while my hammer led me to see nails everywhere not everyone had the same tool. 

One great lesson for me came by accident in around 1991. I was Advisor Disability Licensing cover northern NSW with a brief to inspect and license over 130 aged and disability residential and employment services.  I had no previous experience in this area. Because I sometimes spent all week in the field, I had a lot of time to listen to radio shows and audiocassettes. I didn’t listen to music because I was on paid time and figured I should be educating myself. I came across an audio course on conflict resolution in my department’s library. There were 6 audio cassettes which I played repeatedly over about 3 months. When I stopped at a service, I practiced what I had been listening to. I got to be very good at conflict resolution – a skillset that has served me well since. 

I brought those conflict resolution skills into my role as DEN lead. As my consultancy progressed, I became more aware of other experiences and skills I had brought into that role. I became more able to talk with ERG leads about tapping into life experiences that could inform their sense of leadership.

Diverse leadership inspiration

A few recent experiences, including my consultancy, have made it clear to me that being effective leader for any ERG is vital, and that allowing one person to dominate can be a problem. There are, of course, individuals who are great leaders.  When I was an ERG lead, I realised I needed more eyes and minds than just mine on the job. That was an attitude I developed when I was contract managing employment programs and Business Enterprise Centres – develop collective leadership commitment to identify and address issues of concern. I created regional coalitions of services to enhance service delivery, share insights and imagine potentials. 

This experience inspired me to create the DEN’s Guidance and Action Team (GAT) – 15 members who volunteered to be more involved in helping the DEN address inclusion and equity issues.

Another useful experience was my time in 1997 as a Community Recovery Coordinator on the Tasman Peninsula after the 1996 shootings at Port Arthur. I learned just how important it was to listen to multiple voices and back off if you are the wrong solution for the problem. My employer had developed an idea of unmet need through talking to community ‘leaders’ but didn’t talk to the community itself. It needed some gentle support but not some clown running around organising meetings they didn’t want. Mostly they wanted to be left alone. There was a need to be met, but it was the one articulated, not the one imagined.

This taught me to not assume my take was the best one, and to listen with care and respect to what others were saying.

The leader as hero isn’t a good idea

Leadership isn’t about control, though it might be about being in control of oneself. It is more about influence. This is a modern development arising because the old hierarchies no longer exist. Now we may be leading people who are older, more experienced, better qualified or who have greater expertise – people who are our equals.

My predecessor on the Tasman Peninsula spoke only to the community and government leaders. They assumed the existence of a need but did not check it out. Only a few people thought there was a need to ‘lead’ community recovery. This was old hierarchical thinking.

There is an abundance of very good books on leadership available. They reflect a contemporary data-driven approach which is grounded in psychology at an individual and organizational level.

My favourite is Loretta Malandro’s Fearless Leadership because it was ideal for me as an ERG lead getting my head around being in a leadership role that really had no formal status. Malandro introduced me to the idea of situational leadership. Brené Brown’s Dare to Leadwas also inspirational. I was keenly aware that both had the theme of courage in their titles. But this wasn’t about being heroic so much as overcoming one’s own doubts and committing to influencing – being bold enough to share one’s vision (sourced, of course, from many people).

I think the GAT was an ideal manifestation of this new way of thinking. In September 2018 I called for volunteers from the DEN membership. Fifteen responded. They were smart, passionate and hurting. They were cranky too. It took 12 months to persuade them to be a disciplined and professional force for good. I have since repeatedly referred to the GAT as the heart of the DEN and I was surprised when one of the original members said I was just saying that. I wasn’t. The DEN’s success would not have been possible without them.

Culturally we have moved out of hierarchies into communities of equals. Our organizational structures are slow to reflect this, but we know it as individuals. We see this in the language of teams, and we know it from our direct experiences. We respect competence and capability, not position.

Organizations demonstrate the degree to which they are slow to catch up with this reality by the fact that narcissists and psychopaths are disproportionately represented amongst the ranks of executives. Similarly, people who are psychologically ill-equipped to work well in teams aspire to leadership and management roles – and often succeed.

Effective leadership in ERGs

ERGs are modern phenomena that reflect our contemporary values of representation by peers. When I became a founding member of my department’s DEN in 2010 there was still a hierarchical spirit around. But that was 15 years ago when some ideas and values were still in the early stage of definition and transition. 

ERG leadership is still seen by some as a heroic individual or two co-chairs or co-leads. The term ‘chair’ reflects the legacy of an ERG being seen as a staff association of amateurs and volunteers rather than a vital employee-led group of competent and professional peers. I now prefer the term ‘coordinator’. The need for effective leadership is still there but the term reflects less reliance on hierarchical status and more reliance on functional skills like inspiration and persuasion. I am constantly reminded of Ernesto Sirolli’s advice – “You cannot motivate, only inspire!” 

ERGs operate outside the normal organizational hierarchy. As DEN lead I had direct access to my department’s Secretary and three Deputy Secretaries. This was something neither my manager nor Director felt comfortable about. These were also relationships I had to manage with great care.

This makes situational leadership a challenging role to perform. If done well it can be transformative. If done poorly an ERG will languish in ineffectuality.

Conclusion

The opportunity to work with ERG leads obliged me to delve deeper into the theories of what an ERG is than I had done before – and I found that there weren’t any that were of much use. There were assumptions and habits lingering from a transitional phase that should have ended a few years back. Part of the problem has been that ERGs haven’t been studied. They are widely perceived to be ineffectual and hence not worth inquiring into. The other part of the problem is the lack of self-reflection by ERGs themselves. Organizations maintain them as a good idea – in a vague sentimental manner. Nobody has done a value for money assessment.

However, well-led companies do support effective ERGs, probably because there is a culture of accountability and a theory of what the ERGs are for. Public sector ERGs are a manifestation of intent to comply with legislation and policy, and that is often enough for an agency. This leaves many a public sector ERG with untapped potential that can be realised through effective leadership – from the organization as well as the ERG. A key task for such leadership is negotiating a theory of the function and benefits of an ERG within an agency/sector and securing the resources to deliver those benefits.

The attention given to leadership these days reflects a critical trend. It’s not that there is a greater demand for leadership per se, but for far better leadership. This is probably no better demonstrated in the works of two former navy seals – Jocko Willink and Leif Babin. Their book, The Dichotomy of Leadership has a 4.8 star rating on Amazon, with 87% of the 6.9k reviewers giving 5 stars. That’s extraordinary, and it reflects a desire for greater self-awareness and personal accountability among current leaders. It’s a great read.

The theme of leadership has attracted a huge level of serious research and scholarship for the past few decades. This reflects the growing recognition and importance of effective leaders in our non-hierarchical age. They can make or break organizations and teams. In the contemporary business environment that is a critical element in survival and success.

For ERGs, DENs or staff networks (call them what you will) leadership is under-estimated and under-valued. There’s a lot of work to be done if we want these groups to deliver on the unique potential they hold. 

As usual, I want to promote the work of PurpleSpace. It is still the only organization I know that is dedicated to creating effective Disability ERGs.

Introduction

RUOK Day is on Thursday 11 September this year (2025). Each year it triggers the same concern in me. The idea of the day is powerful but those who are asked to be prepared to ask whether a workmate, friend or family member is feeling okay may not have a comfortable sense of what psychological stress or distress might be. 

This dimension of our wellbeing has long been dominated by the idea of ‘mental’ health or ‘mental’ illness. While there is a persistent dogma that insists that being human is something only psychiatrists understand, there is a strong and growing self-care, self-awareness, self-management movement. 

I grew up at a time when emotions were dismissed as signs of weakness – fit only for children and women. It really wasn’t until the late 1960s that this mindset began to change. But it still took a few more decades before thinking about emotions became popular. I read Daniel Goldman’s Emotional Intelligence shortly after it was published in 1995. Now, a quick search of Amazon throws up over 50 offerings on the theme of emotional intelligence. 

Research into organizational behaviour and leadership has produced a rich source of content that emphasises the critical value of self-awareness and personal accountability. 

There are over 50 podcasts on psychology, as well as YouTube videos and who knows how much else on other social media (which I don’t use). 

However, it doesn’t matter how much content is around if people don’t engage with it and don’t become comfortable enough to reach out to somebody in need. 

The line

Toward the end of my time as a disability ERG lead, I became concerned about what members with diagnoses of depression were telling me about the stigma they felt. I wanted to do something to ‘change the conversation’.  In early 2020 I started working with the Global Leadership Foundation (GLF) on what became a pilot program we called Getting Above the Line (GATL). It had promise as a means of helping people become more aware of their emotional reactions by giving them a simple tool rather than a psychological theory. 

The GATL program consisted of 4 1-hour sessions held over Teams or Zoom. It introduced the Personal Responsibility model and then explored how to use it.

The line refers to an idea that there are states of emotion where we feel in control and states where we are not. It’s called ‘the line of choice’. Above it we accept personal responsibility for our behaviour. Below it we blame, defend, deny and justify.  Below are the elements of a scale, with my rephasing). So, above the line, in ascending order there are – recognition(awareness and ownership), social value (positive constructive response), wisdom (insight) and presence (above it all). Below the line, in descending order, are – automated responses (negative and reflexive), exaggeration (blowing things out of proportion), survival (just hanging in), preoccupation (can’t let it go) and delusion (self-justification and denial of any responsibility).

Rephrasing is a useful exercise because it’s a measure of the extent to which you acknowledge that these are the stages we go through.

I like the GLF’s essential themes, and I especially like the idea of emotionally healthy leadership. There has been a lot of research into leadership in the past decade or so emphasizing the importance of self-awareness and personal accountability. Leadership is a useful theme because it applies to situational leadership rather than just formal roles. Leadership includes a capacity for empathy and the need to create psychologically safe settings for others. 

In fact, the failed NSW government’s Age of Inclusion campaign from 2020 had a manifesto which envisioned that leaders would “inspire with self-awareness and empathy”. Unfortunately, nobody thought to add those capabilities to  team leaders’ and managers’ role requirements – which was a great pity. 

In the context of Disability Inclusion, I prefer organizational leadership texts because they are a well-structured, data driven, and actionable guide to relational and situational self-awareness and personal accountability.  Others may prefer guidance of the self-help or spiritual variety. The point is that there are essential insights that are the foundation of self-managing one’s emotions. It really isn’t effective to reach out to others if you haven’t that vital insight into your own capacity to be aware of and regulate emotions. 

The GLF has a nice little free booklet, Emotional Health and Leadership. You can download it here.

My hope with GATL was to have facilitators trained so the program could be run across my department. But 2020 wasn’t a great time for innovation, even though the need for help to stay above the line was urgent.

What the data tells us

In Australia 23% of people with disability say their primary disability is psychological. Anxiety and depression are by far the most common diagnoses. Aside from those with formal diagnoses there are many people whose lives are influenced by stress and worry – whether at work or in one’s private life. 

In the 12 months prior to the Australian Mental Health and Wellbeing study (2020-2022), the most common mental illnesses in Australia were:

• Anxiety disorders (3.4 million people, or 17% of the population)
• Affective disorders (1.5 million, or 8%) (depression etc)
• Substance Use disorders (650,000, or 3%) 

Psychotic disorders are found in only .5% of the population. So, the most common ‘mental illness’ we encounter is anxiety – something we all know at various times. Depression seems to be the next most common – also something most of us have encountered.

The lived experience

I have no doubt that some people do get into situations where they can’t switch off an emotional response and clinical intervention is the best option. But we so mistrust our emotions that we are prepared to surrender normal emotional responses to clinicians who need to make a living. Some years back I read an article lamenting the way that normal and natural grief was being treated as a disorder by doctors. Not everyone acts in our best interests.

We need to remember that we are heirs to a wide spectrum of emotions, and sometimes our natural capacity for resilience is overwhelmed or impaired. We need help. But this is help that should come from friends and family – and would, if they hadn’t been disempowered by being convinced being human isn’t something we can’t figure out for ourselves.

People with clinically diagnosed conditions are put in a bind. What starts out as an act of self-care can end up being a source of shame. I have been told how the fact of having been given a diagnosis becomes a stigma. One person told me that they disclosed they had a diagnosis of depression to their manager because they did need some accommodation because of a significant personal event. Prior to the disclosure they were trusted to work with little close supervision. But afterwards not only did supervision suddenly increase but their judgement was questioned as never before. Efforts to discuss these changes with the manager were futile.

Back in the 1970s I worked in several psychiatric hospitals. I later worked in Veterans Affairs, where, in the process of preparing summaries of clinical evidence for tribunal hearings, I read and summarised countless psychiatric reports. In subsequent years I worked with accommodation services whose residents were former psychiatric hospital patients. I have long felt comfortable with the idea of mental illness, and this is why I don’t think the term suits people who have experienced emotional distress.

I understand how mental illness has been represented in our community and why any suggestion of it might make a manager, indeed anybody, might react badly. We need to reclaim our right to our experience of the lows as well as the highs of being human without ‘expert’ intervention (unless we ask for it or it is deemed really necessary).

Conclusion

My concern about RUOK day is that it is one day of the year. That’s okay for birthdays, Christmas and Fathers’ Day (I got a very nice highland single malt). But RUOK should only be a reminder that we need to be developing our capability to be open and empathic as a fundamental capacity.

Almost 25% of people who say they have a disability have one relating to their psychological wellbeing.

But there’s more to that than just this. Disability can be traumatic. I spent 10 months in hospital after contracting GBS. I left with serious disabilities. I contracted GBS in April 2008 and come September 2025 I cannot recall anybody asking me how I was coping with such a catastrophic loss of ability. I am doing fine. Thanks for imagining that you have asked me.😊

I am a fan of the ‘Special Olympics’ but I do wish they’d change the name. I remember how ‘special needs’ decayed into the insult of being ‘special’.  The performances are riveting to me because I know a little of where the athlete has had to come from. I am not inclined to emulate them because I am a nerd and sport isn’t my passion.

That said, I fear there is an unintentional misdirect going on. Olympic heroes with disabilities can create an illusion that all people with disabilities must be heroic. This isn’t a conscious thing, but it’s the kind of stereotyping that kicks in without us knowing. 

For example, the 2020 Age of Inclusion campaign included a good reason for employing people with disabilities that was that they were good at problem solving because their disability meant they were good at navigating impediments in the world. No. Stop laughing. I am serious. This was real. It took me near 18 months to get it removed from the Public Service Commission website.

I suspect that some Olympians with disabilities process the trauma of the cause of their disability through dedication to their sport. If you get your lower leg blown off by an IED, becoming an Olympic level athlete makes sense. I write blogs on Disability Inclusion as a way of processing my trauma.

So, my point is that disability can carry its own sense of the visitation of an outage on one’s sense of personhood and cause grief, depression or anxiety. The heroic response is not appropriate for everyone. That’s a myth from a different time. We must be accepting of, and gentle to, ourselves and open, and inclusive of, the pain others experience in whatever hurts them.

To me RUOK day is a reminder for me to ask myself how okay I am to reach out and be a good friend to somebody in need of emotional succour.

And you?

Introduction

A former colleague sent me a newsletter from a body called DENconnect. I read it with great interest and finished it puzzled. It stimulated me to refresh my understanding of DENconnect.

DENconnect’s formation was initiated by the NSW Public Service Commission a few years ago. The original intent was to network Disability Employee Networks (DENs) across the sector. That would have been a useful development but that wasn’t how things panned out. DENconnect is now a separate body with no specific connection with any DENs, despite what its Terms of Reference says. 

To my mind this is a deeply confused development supported by people with more interest in disability as an identity than addressing the inclusion needs of staff with disabilities. It is more performative than solution finding. It is more about feeling good than doing good. 

As I noted in my earlier post on my Functional Disability Theory, I have little sympathy for performative identity politics when there are staff with disabilities with access, equity and inclusion needs that are unmet. DENconnect asserts its primary objective to be Provide an accessible, safe and engaged space where employees with disability, their ally’s (error in original) and champions can all meet and advocate for an accessible and inclusive NSW Government not only for its customers but for employees with disability, executives, and Ministers (from the Terms of Reference 12 April 2024).

Why and how this differs from agency DENs isn’t clear at all. What is the unmet need that DENconnect sees it is filling?

DENconnect imagines an “accessible and inclusive NSW Government”. That might be a noble vision, but it makes a problematic assumption. It says “…not only for its customers but for employees with disability” as if the primary concern for DENconnect is for the government’s “customers”. That, by the way, is an absurd terminology and reflects the disproportionate influence of the Department of Customer Service on the framing of DENconnect. “Customers” includes inmates of prisons, the ill, the homeless and many more who would not regard their contact with the various arms of the public sector as a ‘customer experience’. Some have observed that the police arresting and locking up their ‘customers’ hardly constitutes good customer service. Here language matters because it reflects an unconscious orientation. 

The Customer Service portfolio has 13,390 staff (2024) compared with Communities and Justice which has over 56,000 and which includes corrective services, police, state emergency services, fire and rescue, public housing and child protection. Terminology like “customers” not only reflects an insular perspective but also a lack of consultation across the sector. This matters because agencies dealing with problematic engagement with the community have ‘frontline’ work environments that are less conducive to staff with disability than ‘nicer’ ‘back room’ work environments.

DENconnect’s mission seems ‘relaxed and comfortable’ with the time to deal with non-critical concerns. The reference to “feel safe to disclose their disability”, “raise awareness”, “advocate for” and “talk about” is in stark contrast to a professional DEN networker. Contrast this language with a comment on PurpleSpace’swebsite from a member – “We needed to bring people together to ask some big questions. Did our strategy have focus? Were we executing it adequately? Were we rewarding our volunteers correctly? Did our executive sponsor have our backs? Ultimately, how would we know we were doing well as a network?”DENconnect’s language is very general where the PurpleSpace comment reflects a focused, dynamic and self-reflective orientation.

This more passive and somewhat distracted orientation struck me around the launch of DENconnect. I was at a meeting along with other DEN leads and representatives when the subject of recruiting more staff with disability came up. There was surprising enthusiasm for DENs being involved. This was not something I supported. A DEN, I believed, had one primary focus – assuring existing staff with disabilities were able to do their jobs with dignity, without fear, and with assured access to what they needed.  Of course, a DEN also has a role of ensuring inclusive recruitment practices for existing staff with disabilities and so might offer insight and advice on external recruitment, but as subject matter experts rather than as DEN representatives.

The DENconnect Charter includes this puzzling statement – “We will build and support each other via networks formed in DENconnect. We will actively support career progression or development opportunities for our colleagues with disability and talk about how we can achieve thriving careers in the NSW public sector.” The first thing that struck me is the absence of any reference to other DENs, or addressing unmet inclusion needs of current staff with disability. DENconnect seems to be unrelated to the concern about unmet inclusion needs – and an entirely separate entity in competition with agency DENs.

In one part of the Terms of Reference we find “The different departmental DENs across the sector come together through DENconnect.” The Introduction boldly asserts that “DENconnect is a hub for all existing NSW Government Disability Employee Resource Groups (ERGs) or Disability Employee Networks (DENs) to connect.” But its not, and this is reflected in its structure. It has a committee with 8 members – Co-Executive Sponsor, Co-Chairs, Co Secretary’s (error in original), Treasurer, Comms Lead, Events Lead, Member Inclusion Lead, Co-Advisory Leads.

There is no reference to DENconnect being a representative body for the sector’s DENs other than the brief presumptive assertions above. Nothing in the Terms of Reference demonstrates any regard for any DEN. For example, one might expect that the committee might constitute formal representatives from other DENs, but there is no such provision. 

What, then, might its purpose be? Under the heading More Information we find “DENconnect is a sector-wide network which operates out of the Department of Customer Service (DCS)” This is odd. Why would it need to operate out of any agency? Was anything about DENconnect assented to by any other DEN? (not to my knowledge). Was any part of the Terms of Reference assented to by other DENs? (not to my knowledge). Or is DENconnect essentially a project of the Department of Customer Services? (it seems so).

What identified need is being filled by DENconnect? There was a perceived benefit in individual DENs connecting and sharing experiences. I was part of an early effort. It didn’t go anywhere because DENs were in various states of development and support, and their leads had widely disparate beliefs about what they were doing. There was no strategic guidance at that early stage – which may explain why we have what is there now.

I am struggling to find any justification for DENconnect as it is. As things are across the sector, running any kind of staff network is challenging. Time to run a network is scarce, so the effort put into operating a DEN has to be as effective as possible. Splitting time and effort across two bodies – one’s own agency’s DEN and DENconnect would be problematic for many.

To complicate matters, membership of DENconnect is independent of agency DEN membership. It is possible to be a member of DENconnect only – which effectively makes DENconnect a parallel and competing body, rather than a complementary and uniting one.

What’s with Let’s Rock NSW?

DENconnect has been a major force behind Let’s Rock NSW. I don’t know how to describe this phenomenon. I first heard of it when there was a day out at Luna Park, North Sydney in 2023. I was stunned. I could not imagine a more self-indulgent, self-congratulatory thing to do at public expense. I spoke with a few people who attended, but they were unable to persuade me that they ‘deserved’ that day out. 

The most recent event (June 2025) had an agenda, accompanied by an image of a finger (I can think of only one thing) and a blurb – “At the heart of Let’s Rock NSW is the carefully curated program which promises to rock the foundations when it comes to disability in the workplace.” Let’s look at the main part of it:

• 2:10pm Keynote speaker Hannah Gadsby – Comedian, Writer, Art Person
• 2:40pm Rockin’ it out – audience participation
• 3:00pm In conversation with… Dr Dinesh Palipana OAM – Doctor, Lawyer, Disability Advocate, Researcher – facilitated by Sarah Rose – Paralympian, Author, Disability Advocate, Podcaster, NSW Government Employee
• 3:35pm NSW Government showcase – Disability Inclusion initiatives
• 4:10pm Closing remarks – 4:20pm 

Here’s what I saw in the agenda, remembering that this was an event for public servants with disability held under the auspice of the NSW government. Neither Hannah nor Dinesh are expert in disability in public sector workplaces. There was 35 minutes allocated to showcasing Disability Inclusion initiatives – about which nothing was subsequently reported, not even at 2025 Let’s Rock NSW event highlights. There were no speakers who had expertise in the NSW public sector. There were no presentations by anyone from the NSW public sector other than introductory remarks. No DENs were given the opportunity to talk about challenges, successes and solutions. In sum, the event ducked the hard issues and was more about having a good time. There was that 35-minute nod to Disability Inclusion initiatives of course. But surely that should have been the focus of the event?

This was a “carefully curated program” designed to “rock the foundations when it comes to disability in the workplace.”? The Department of Communities and Justice was strongly represented at the Australian Disability Network’s (AusDN) Awards Night following its Annual National Conference in May 2025. It would not have been unreasonable to expect, given the theme of the event, that the department would have been invited to speak at the event – and maybe even given the opportunity to deliver the keynote address.

The department has participated in the AusDN’s Access and Inclusion Index assessment since 2019 and was awarded: 

• 2024 Access and Inclusion Index: Best in Class – Candidate Experience
• 2024 Access and Inclusion Index: Best in Class – Workplace Adjustments

It also had its Disability Confident Recruiter status renewed for 2024-2025. These achievements would, one might think, be of interest to the whole sector, and especially at an event touted as rocking the foundationswhen it comes to disability in the workplace.

In addition, the DCJDEN was nominated as the winner of the inaugural DEN of the Year award by AusDN, in 2022.

But let’s put this into a wider perspective. DCJ is one of around 25 NSW government agencies which are members of AusDN. DCJ joined PurpleSpace in 2018. The DCJDEN, in company with executive sponsors, presented on its innovative work at the AusDN annual national conferences in 2019 and 2020. In 2020 the DCJDEN chair was offered a fulltime disability specialist role – including DEN Chair as a substantial component (2 days a week, I think). The role was also involved in the Access and Inclusion Index and the Disability Inclusion Action Plan. So, the 2025 awards reflect an ongoing commitment to Disability Inclusion by DCJ that is, I believe, unparalleled in the sector. 

Despite this track record, DENconnect, remains oddly incurious about DCJ’s work on Disability Inclusion. I should observe that I am not excluding other agencies who are doing good work. DCJ is just a glaring example. 

The NSW Public Service Commission’s Linked In account carried this: Let’s Rock NSW – Rethink Disability – Last week, hundreds of NSW public servants attended Let’s Rock NSW, a groundbreaking event on challenging perceptions of disability and driving meaningful change in the NSW public sector. It’s difficult to understand what was “groundbreaking” about it, given the serious work done by agencies that are members of AusDN or PurpleSpace – or both.

It is noteworthy that even the website carried the ‘highlights’ of the event and nothing on the NSW Government showcase – Disability Inclusion initiatives. These seem nowhere recorded or available for review or exploration.

The hype and hyperbole about the event haven’t been backed up by any apparent report of outcomes. What was groundbreaking? What has changed? What is the benefit delivered? 

The ground of confusion

I don’t have a personal beef with DENconnect. It is symptomatic of how a wider social movement can distort the environment in which it intends to be a positive influence – but isn’t. This is what concerns me.

As I noted in an earlier post, I am not a fan of the disability identity trend. My approach to disability is entirely functional. It’s not that I want to ignore the diversity of people with disabilities. I do get that having a sense of being a person with disability can bring meaning to life experiences that might otherwise be perplexing or even distressing. 

But not all disabilities are relevant to all situations. There is a great distinction between being a person with a disability and a person whose disability adversely impacts their work experience. Hence my focus on functional issues concerning disability and my assertion that if your disability doesn’t require an adjustment or an accommodation, it’s not really relevant beyond being a statistic that adds to the spectrum of diversity in the sector, relative to the community it serves. 

The NSW public sector has a responsibility to ensure the workforce reflects the community. That means that it should be working toward having, and being able to measure and report on, a percentage of its workforce with disabilities that is similar to the community. 

The generally accepted figure in Australia is that 18% of the population lives with a disability. At present the target for people with disability employed in the NSW public sector is a modest 5.6% by 2025. This figure was set back around 2018 and seems not to have been revised. It is based upon internal agency diversity data, which is different from the People Matter Employee Survey (PMES) reports. Fewer people declare disability on internal diversity systems than those who report disability on the anonymous PMES survey. The mismatch is due to fear that the internal system does not preserve anonymity.

The NSW Public Sector Report of 2024 notes on page 25 that “In 2024, 2.7% of our workforce reported having a disability…” Considering that some agencies, including Customer Service, showed 10% or higher staff with disability on their 2024 PMES reports, that disparity should be a huge signal for DENconnect – that an invaluable service would be to encourage staff with disability to register on their agency’s diversity records and to address the root of fear.

The visibility of people with disability in the sector is a good thing in terms of understanding the extent to which the community is reflected in the workforce. But without there being an assurance of genuine inclusion within workplaces, there is no way of knowing how many staff with disability are suffering exclusion, disempowered in silence. 

There’s a spectrum of disabilities that are termed ‘invisible’. We know that people who don’t have an apparent disability are disinclined to ‘disclose’ if they see that people with ‘visible’ disabilities are not treated well. 

Our natural bias is ‘ableist’. That is to say that we assume that, in the absence of obvious signs of disability, none exist. This is nowhere better demonstrated by the reactions experienced by hearing impaired people when they ‘disclose’ their disability and ask for an accommodation – like for someone to speak slower and more clearly. Such a request can often trigger an angry response.

Mental illness is another major problem area. It is poorly understood and subject to quite cruel stigmas. Even though anxiety and depression are the most commonly diagnosed conditions and hint at no gross disordered behaviour, we struggle to talk about ‘mental health’.  In 2018, 23% of people with disability said their “main health condition was mental or behavioural”. We won’t talk about ‘mental illness’ directly and struggle with vague expressions like ‘mental health issues’ and even desperately declare that somebody is “suffering from mental health”. I heard senior government representatives use that exact phrase several times. 

There is a lot for a serious DENconnect to work on in a deliberate, constructive and representative way. But it must be clear about its mission. The DENs were originally created to address unmet access and inclusion needs of staff with disability. But now DENconnect has interpreted that mission to be about celebrating the diversity of staff with disability and supporting their career enhancement desires. That’s not an illegitimate mission. My argument is that it’s just not an appropriate mission at public expense while there are staff with disability in the sector whose access and inclusion needs remain unaddressed.

It could have used the Let’s Rock NSW (needs a less juvenile name) event at Randwick Racecourse in 2025 to explore why some agencies have high rates of PMES disability disclosure (e.g. Customer Service and DCJ both have 10% and Legal Aid NSW 14% – others, like the NSW Police Force, are as low as 4%). There is, in fact, a considerable body of data that creates a foundation for an analysis of what works and what doesn’t. You’d hope that the sector has the intellectual chops to undertake such research. But, as I noted, there is a stark absence of effective analysis and insight – as well as curiosity. 

DENconnect is really just a symptom of a much larger problem – a lack of insight into disability inclusion at all levels of government. While there is professed support – because it is mandated by law and policy – there is little moral and intellectual effort applied in a coherent and coordinated manner. DENconnect has a far greater level of government funding and support than agency DENs because it performs a service of ‘caringabout’ without actually delivering any discernible benefit to those who most need its support.

The trend toward disability identity has confused the landscape. Staff with disability who continue to experience exclusion and even abuse are, in effect, collateral damage caused by a movement which hardly acknowledges their presence. 

This is what happens when disability becomes performative. Those who can’t/won’t perform are rendered invisible and irrelevant.

Conclusion

DENconnect strikes me as a well-intentioned but confused entity. It is doubtful whether the members experience much discrimination. This certainly seems to be the case in Customer Service, which appears to be a genuinely caring organization. It is one I deal with more than any other NSW agency, and I have been routinely impressed by the quality of service provided. 

It should not, however, be running DENconnect. The Public Service Commission lists 13 DENs across the sector. Two of them are in the Communities and Justice portfolio – where work environments are very different and challenging (police, corrective services, child protection for example). Two of the other DENs are in fields of service that involve a high level of public contact and where work environments can be challenging (education and health). 

These public contact services have very different cultures and associated risks for staff with disability. These service outlets are scattered across the state in small work teams where bullying is reported more frequently than in the city-based agencies with little direct public contact. The 2024 NSW Public Sector Report notes that: Frontline employees experience higher rates of bullying compared to non-frontline employees. In this year’s People Matter survey, 15.4% of frontline employees reported experiencing bullying, compared to 11.6% of non-frontline employees. (Page 38)

The report also says that: …bullying disproportionately affects individuals with certain demographic characteristics. Non-binary employees reported the highest rate of bullying at 25.4%. Additionally, 24.5% of respondents with disability reported experiencing bullying. 

Customer Service does have public facing services around the state, and there will be members of the public who misbehave. But that’s not equivalent to what police, community services or health deal with.

There is no strategic or intellectual oversight on Disability Inclusion in the sector. DENconnect could provide oversight but it would need to be self-critical, curious, strategic and more representative. The sector, as a whole, can’t provide it because Disability Inclusion is controlled by people with neither lived experience nor insight into disability, in my opinion. The Department of Communities and Justice has primary responsibility for commentary on disability and is uninterested in saying how many staff with disability work in that business area.

There is no doubt great work being done on Disability Inclusion in the NSW public sector, but those doing it are not being celebrated or given a platform to discuss the challenges and strategies to overcome them or celebrate successes. In fact, they seem to be studiously ignored. But maybe, in fact, they are simply not known.

The sector has no theory of Disability Inclusion. In DENconnect’s case it has a vague set of sentiments and no sense of urgency – as befits its environment inside Customer Service. Its ‘nice’ and ‘comfortable’ with no sense of the raw end of trauma experienced by some staff with disability. 

During my time as DEN lead, I was involved in quite a few cases where a staff member was subject to what can only be described as inept and cruel treatment at the hands of managers and, sometimes, colleagues. There is no point in giving staff with disability ‘a voice’ if no one will listen. And there is no point in claiming to be a representative if those who need help can’t/won’t be heard.

The NSW public sector has a wide range of agencies ranging from under 50 staff to over 25,000. Depending on the type of work done and the size of the workforce, staff with disability could be in small teams with responsive managers or in teams in high stress roles with problematic management.  An effective DENconnect would be across these issues and orientated to address them. But, because it has set itself up in effective competition with agency DENs, it has no access to this critical insight.

When a person with disability gets to where they can indulge themselves and trade off the fact that they have a disability, talking about career enhancement rather than psychological safety that is a sign that they have the adjustments and accommodations they need. If that’s their perspective on the sector, that is what they will convey.

I made the point in my The limits of caring post that caring about and caring for are very different things. The former is self-serving – feeling good about one’s identity and fitting into a culture of like-minded folks.

The sad thing about DENconnect is that the people involved are ‘good people’ who seem to me to have invested a lot in their sense of identity as a person with disability. But this is far from being able to meet the needs of staff with disability across the sector who are still experiencing discrimination and abuse. There is no sense of urgency or determination. There is no evidence of an intellectual overview, a strategic insight or a sense of mission. There is certainly no thought of holding the government to account – at agency or ministerial level. There is no activism of the kind that will drive real and enduring change.

I do not understand how a body purporting to represent staff with disability across the sector can behave this way. DENconnect’s statement of purpose asserts: “DENconnect is proud to be building an inclusive culture where people with disability, their colleagues, and allies, support each other to build strong successful careers.” But that ‘culture’ is inclusive only of those who want, or are able, to join it.

There’s a vital distinction between an ‘inclusive culture’ that can be selective about its members and an ‘inclusive workplace culture’ which cannot. The original mission of DENs in the NSW public sector was to create inclusive workplaces – including cultures. That takes skills that must be developed and refined. This is why agencies who are serious about Disability Inclusion align their efforts with organisations like AusDNand PurpleSpace.

It is interesting that DENconnect doesn’t appear to want to be part of this more serious effort.

Introduction

I recently had the great pleasure of meeting Seb Ducarme, Membership Engagement Manager, PurpleSpace by phone. Seb is based on the east coast of Australia but has a global reach. The great thing about him being here is that he will be able to run the kind of events that PurpleSpace runs in the UK and Europe.

Before I go on, I should make it clear that this isn’t an ad for PurpleSpace. It’s more an ongoing affection that stretches back to May 2018 when PurpleSpace’s founder and CEO, Kate Nash, gave the keynote address at the Australian Network on Disability’s Annual National Conference in Sydney. The next day she ran a workshop on Networkology at the Westpac Bank’s HO. 

At the time I had been a Disability ERG lead for 17 months. I had spent that time rebuilding numbers and the ERG’s profile after a prolonged period of restructure and doing the conventional stuff – 4 meetings a year and not a great deal in between.

Kate Nash ‘radicalised’ me and in turn I transformed the ERG into a potent force for change in favour of staff with disability. I won’t retell the story. Suffice to say that in September 2020 my successor was offered the ERG lead role as fulltime. It included a few other jobs as well, which put the ERG lead in the driver’s seat for energising change in favour of staff with disability. That was an extraordinary commitment to an experiment in employee-led positive change. It began with Kate’s keynote speech.

In 2019 and 2020 I was invited to present at the Australian Network on Disability’s Annual National Conferences on the innovative work the ERG had been doing.

Below I want to reflect on how and why I was ‘radicalised’ to become a highly effective Disability ERG lead.

Networkology

Kate introduced me to the idea of Networkology in company with the notion that data was important when it came to Disability Inclusion. The idea that Disability Inclusion was a rational discipline wasn’t a shock to me other than it hadn’t entered my head that it could be applied in this case. I had been reading in management theory for decades and completed an applied management program. But I hadn’t imagined this applied to Disability Inclusion – the realm of volunteers and amateurs.

I had been involved in the Disability ERG since its founding in July 2010 and had never thought of it as more than a passive staff association mostly providing lived experience insight for policy and program reform.

With the advent of the idea of Networkology the ERG became an energised agency for advocacy and a driver of change. I eventually envisioned it as a de facto business unit – a professional partner with the department creating the changes we all wanted to see happen.

I comprehended Networkology as a discipline, a science and this utterly transformed how I operated. Thank you, Kate!

The life of a Disability ERG without Networkology

Our original Disability ERG was set up as a kind of staff association. This was novel to everyone, and our first job was to educate HR on the reality of being a staff member with a disability in the department. This was a good and productive process for awhile and then things went slow. We had gotten disability onto the agenda. This was a priority, but now we had made it, we were competing for attention and resources like everything else on the agenda. 

We had neither the culture nor the means to grab and hold attention, so after the initial success we lost ground. It was now okay that unresolved issues of accessibility, fairness and bullying could be put on the backburner until there were funding and attention available to address those needs. That was not a good thing, but what to do?

I was aware that other Disability ERGs had adopted a union-flavoured approach which developed a contentious sentiment toward executive leaders. That hardly helped. I wanted collaboration and partnership. Networkology gave me the theoretical model and then, when we joined PurpleSpace, there were practice guides to make it happen as well.

Conclusion

PurpleSpace is the only organisation I am aware of that has a professional commitment to supporting Disability ERGs and their organisations. I was very fortunate that my department’s executive leadership fully understood that commitment from the top was crucial if the Disability ERG was going to be an effective partner in helping the organisation meet its obligations concerning Disability Inclusion.

However, I more often saw that organisations assumed that their staff association-based Disability ERGs were responsible for leading implementation of the vital changes that ensured accessibility, equity and fairness. They are not. They are critical partners in delivering those changes that the organization is responsible for ensuring happen. Maybe Disability ERGs also have a role in reminding the organisation of its duty and priority – but as an equal partner, not as an amateur and volunteer body.

Driving any kind of change in an organisation is a complex and challenging role. Disability ERGs should be playing a vital part as an equal partner in bringing those change efforts to fruition. But to do so skills must be developed, relationships must be established, and insights must be distilled and shared.

Neither Disability ERGs nor their organisations will usually have the necessary insights and skills to make this happen unassisted.

It is no exaggeration to say that my success as a Disability ERG lead was grounded in PurpleSpace’s insights and methods. Their critical insights into leadership capabilities and strategies made the difference for me. One word sums it up – Networkology. There’s a science behind success that can be learned. The art of being successful is up to us – and belonging to a community of practitioners can help that a lot.

Seb said its okay for me to include his email address: [email protected]

Introduction

A former colleague responded to my last post, saying “It’s an interesting perspective… Training doesn’t give us the ‘activating empathy’ bit that we have learned is so important.”

That left me wondering about how we might go about ‘activating empathy’ in a deliberate way on a personal level. As a Disability Inclusion advocate, I could say I am motivated by a sense of justice. I know what it feels like to be excluded because of a disability. But that’s not my activating force. In a way, my ‘life lesson’ is about learning to be more effectively empathic.

People who are responsive to Disability Inclusion efforts are empathic in general and Disability Inclusion only shapes their empathic response in that context.

Empathy is something we all have the potential to express in a strong way, unless we have been traumatised. But its not universal. It is shaped by experience. We may be confident in expressing it, or fear doing so. We may express it gently or roughly, strongly or tepidly.

Where does it come from?

Empathy is built into our biological core. Our brain has mirror neurons that let us ‘mirror’ another person’s behaviour, gesture and posture. We might be so ‘into’ the other person that we don’t notice we are matching/mirroring them. But others will.

Our primate origins have given us instincts to feel belonging with and caring for others who are ‘one of us’ – family, tribe, gang, team, squad, group, community and so on. But, because these are biological instincts, they are not endlessly scalable beyond a certain number of people and the nature of our connection with them. There’s a ‘cut off’ point when instincts give out and ideals take over.

This is when humanistic or humanitarian principles and ideals replace our instinct. We also have instincts to exclude and be unempathic. They came into play when our ancestors found it necessary to compete for resources – either raiding to obtain or defending to retain. Competition is an instinct we need to manage through intentional acts of self-control.

This is the environment we live in. We include and exclude according to our needs and wants. We live within multiple ‘one of us’ associations (in-groups) and in sometimes uncomfortable proximity to multiple ‘not one of us’ (out-groups) relations. 

We can be indifferent or hostile toward out-groups or their members. This can be because of direct experience, history, tradition or belief. Such emotions may need managing in diverse workplaces and communities. We may struggle to be empathic. Taking that ‘higher path’ isn’t necessarily an easy thing to do.

Mapping our connections

It can be instructive to create a mental map of one’s in-group/out-group associations. With my former employer I was a member of a small work team within a directorate which was part of a business area which was part of a division which was part of a department. But my strong sense of ‘one of us’ stopped at work team level because of the culture created by senior management. Managers and above have their own sense of ‘one of us’. Many see a management/worker divide and that can be even stronger among executive leaders.  

My personal ‘one of us’ connections include family and friends, allies in the Disability Inclusion cause, other people with disabilities, members of my geographic community, people who share my interests and beliefs and so on. This is, with all of us, a large group with senses of connection from deep and immediate to superficial and general. 

When you think about these connections for any time you will see that your capacity for empathy is highly selective and variable in its intensity. It is something we can be aware of and make choices about. We can choose to be more empathic.

Being ‘one of us’ can be about powerlessness

Being ‘one of us’ can be about looks, beliefs, interests, origins, gender, sexuality or status. Or it can be about shared experience, including disability. Or it can be because we are also all human beings.

All this matters because efforts at stimulating Disability Inclusion may have to compete with in-group/out-group reflexes. Hence, in appealing to a natural sense of empathy the motivation might be about activating a sense of ‘one of us’ in a work context or appealing to an abstract ideal of inclusion. The ideal might be an undeveloped notion for some and hence require greater cognitive effort.

There is good evidence that people become less empathic as they climb organisational power ladders, so appealing to a ‘one of us’ sense of belonging may not be effective. A gentle reminder about ideals and values might be more effective.

My time as a Disability ERG lead had a lot of focus on cultural change to activate greater ‘one of us’ empathy. But I also understood that stimulating idealism was important in the context of inclusion in general. I have come to understand that these are two different approaches that we shouldn’t confuse.

Sometimes we are united by lower status and relative powerlessness. This is often the case in hierarchical organizations where status and rank are coveted by people less inclined to be empathic. It’s not a great foundation for empathy and should never be exploited in an explicit way. But understanding what triggers empathy is important, as is fostering it in the highest way.

The reality is that Disability Inclusion isn’t usually something one seeks from a position of strength – unless it is accepted as a moral duty by an organisation or community as a shared responsibility. For me, the goal has been to get to that strength position – where empathy is the default response.

The critical value of insight

We can’t train the activation of empathy, but we can stimulate it provided we ‘educate’ for insight rather than information. Back in 2011 I completed a six-month program in applied management, for which, apparently, my employer paid $10,000. The program was solid and thorough, but I was always puzzled why I had no strong recall of the content, even though I applied myself diligently. 

It was only last year (2024) that the penny dropped. I had been listening to a Your Brain at Work podcast from the Neuroleadership Institute when I heard about the difference between training for insight rather than information. If you read, listen or watch for insight rather than information critical ideas can trigger greater learning. But it’s better that learning opportunities are primarily designed to trigger insight. Mostly they are not.

Some people will not be strongly motivated to be more empathic. There’s no point in pressuring them because that will likely precipitate an adverse reaction. But you might be able help them gain insight into why they do not have a strong motive. They may resist. That’s okay. We don’t need to be judgy. However, they might appreciate understanding why other people are giving them a hard time.

Empathy can be hard to do

Expressing empathy is complex and personal. There was some research done a few years back on how corporate executives in the USA were responding to Disability Inclusion efforts. Some executives expressed interest but were not confident in engaging with staff with disabilities because they feared an adverse reaction if they came across as ignorant or insufficiently sensitive. That could have been an insightful moment for a lot of folks, but I heard nothing after. Maybe it was for some.

This is why I am such a fan of PurpleSpace. It’s the only group I know that is dedicated to Disability Inclusion by creating opportunities for insight to be triggered and empathy increased.

Conclusion

Our workplaces are novel communities, sometimes of great diversity. Our instinct to be inclusive creates a background of goodwill which, nevertheless, can be overtaxed by cognitive demands and result only in a positive sentiment.

We naturally imagine we are better than others find us. Positive sentiment can seem to be sufficient. But, when inclusive action is needed, we require a motive force. Here we must allow our workplace communities are stages for evolving ideas and values and consider two motives:

1. Expand the sense of ‘one of us’ through positive culture change via communicating insights about diversity attributes and experiences that reinforce or activate a sense of ‘one of us’.
2. Encourage engagement with ideals and values that champion the idea that ‘all of us’ is ‘one of us’. But while this is an adaptive pressure on our evolving diverse community it risks being distorted by dogmas and unsubtle moral pressure. It needs a light and patient touch guided by triggering insights rather than asserting moral arguments.

We realistically should be employing both motive forces, but not through formal processes like ‘training’. Formality isn’t a friend to empathy. What works better are managed engagements that foster openness and authenticity – conversations among peers and allies.

A weakness of the desire for Disability Inclusion is that we aren’t motivated to understand how we ‘talk’ inclusion while often we ‘walk’ exclusion. We can make inclusion selective and conditional in our own actions while seeking universal and unconditional inclusion from those we don’t see as ‘one of us’. We need a countering insight to stop this contradiction.

Insight begins with advocates being sufficiently self-aware of their own behaviour. What behaviour led an executive to be averse to engaging with staff with disability? How can that concern be addressed by a Disability Inclusion advocate? Can we have empathy for the unconfident executive? To be effective we must.

This is a hazard for a lot of efforts at inclusion. We assume that empathy must flow only toward those who feel excluded. But if those who are doing the excluding do so inadvertently, we must reach out to them. Even those who exclude intentionally may have no insight into why they do so, or the impact of their behaviour. Empathy is a relationship, not an attitude.

This is an argument for greater cognitive effort by Disability Inclusion advocates so that they are capable of performances that trigger insights rather than convey moral pressure and political argument.

Empathy is personal, direct and visceral, not abstract and rationally remote. It says, “I care for you.”

Introduction

When I was a Disability ERG lead, I developed a 15-person team I called the Guidance and Action Team (GAT). The GAT included members who were blind, deaf, autistic, had MS, had a spinal injury but were ambulatory, a wheelchair user, had a diagnosed mental illness, and more. All up there were 10 distinct disability types. 

I had been involved in disability related fields going back decades and even so, the members of the GAT were constant sources of insight. And my fulltime job at the time was almost exclusively disability related. 

In December 2018, I arranged for an experiment with my division’s executive leadership. 

I had four GAT volunteers sit with four managers and engage in a conversation about disability. The exercise was free form. After an initial period of awkwardness, the conversation developed fully for over an hour. 

Afterwards I asked the managers to provide some feedback on their experience. The most senior summed things up by saying that they’d just recently been to a day-long Disability Awareness Course run by the Public Service Commission but the conversation they’d just had gave them far more value and insight. 

In February 2019 I presented before the department’s executive leadership board with six GAT members chosen for their stories of awful treatment as a staff member with a disability. The experience was transformational for the board members and the GAT members. The board members became aware of what was happening to staff under their responsibility and the GAT members felt heard and acknowledged for the first time. This experience transformed the way the Disability ERG operated and led to an enduring momentum of positive change. 

Disability is a huge and complex field. Disability Awareness Training (DAT) is, in my view, a fiction. But some people make money from providing it and other people say it’s a good thing – so my point of view isn’t popular with everyone. 

DAT doesn’t work because it can’t work. It is the wrong solution to a badly analyzed problem. 

So, what is the problem?

There is a need for greater awareness of disability, but that need is not simple or uniform. Frontline service providers have a set of needs, as do policy developers, architects, designers, event coordinators – the list can go on. 

There is a balance also between service providers and managers being aware of the needs of people with disabilities and, so far as possible people with disabilities being aware of the capacity of service providers and managers to respond to their needs -which can vary for a variety of reasons. It is a 2-way matter. 

For me the idea of ‘training’ borders on offensive in the context of Disability Awareness. Allowing that repeated exposure to any set of experiences or ideas will increase the likelihood of something being learned, calling it ‘training’ as opposed to ‘education’ marks attitudes toward how something can be learned. 

For me training builds reflexes or habits. Education builds awareness. There is a good argument that the two, combined, can be highly effective. But both require purpose-driven and repeated engagement. One-off experiences, especially any form of training, do not deliver lasting benefits.

What is missing from both is any thought of activating empathy and compassion. This is very important in the context of Disability Awareness because people with disability may be experiencing exclusion and sometimes actual abuse. Empathy and compassion create motivation for engagement and action.

Stimulating empathy and compassion often concerns developing confidence in expressing concern and responding to need. You can’t train for this – but you can coach. This is where group conversations can be invaluable.

Coaching for Disability Awareness requires a genuine desire to develop greater awareness and a willingness to commit the effort to achieving needed changes in beliefs, attitudes and behaviors. Coaching can be about general or specific purposes and can be one-to-one, or group based. 

We have wide goodwill to be responsive to the needs of people with disabilities to ensure their inclusion in a range of activities in the community or workplace. But training people to be aware of disabilities in a general sense isn’t a useful response if we expect them to act in a desired way because of that training. Usually, such training is like most training – brief and with no organized follow up. 

No new information, insight or capability will stick in our minds without repetition. Quite simply we learn through repetition – unless it is via trauma. 

What we must ask is what is the purpose of any training – what outcome do we want? Often the real, but unspoken, purpose is to meet a compliance requirement rather than genuinely trigger attitudinal and behavioural change. 

What we need to do is to create a culture of openness to individual needs and a preparedness to adapt and provide an adjustment or an accommodation as needed.  This could be helping people to feel comfortable in asking for an accommodation or an adjustment or asking them whether such might be desired. 

A person with disabilities cannot represent all or most people with disabilities.  No ‘trainer’ can do so either, regardless of their claims. 

Disability Awareness isn’t just a one-way street. The burden of awareness shouldn’t wholly fall on one side. People with disabilities aren’t innately self-aware or sensitive to people they are engaging with. They are not passive ‘victims’ who needs are ‘diagnosed’ and ‘treated’ but members of a community/workplace that has competing demands for limited resources.

Our cognitive limits

One of those limited resources is attention. Contemporary neuroscience makes it clear that we must dedicate a significant amount of cognitive effort to learn new things. In fact, from an evolutionary perspective, the need to increase cognitive effort generally reflects a sense of threat. 

We innately like to engage in low cognitive effort activities. This is why bias is a natural reflex – and not the evil it is often made out to be. We can’t eliminate bias, but we can become more self-aware and take responsibility for our behaviour. There are also very good methods for reducing the risk of bias in professional settings. 

Education/training is cognitively demanding. We undertake training or education with enthusiasm or reluctantly and this makes a difference to the effort we put in – and the results we get. 

It is well known that mandatory training often generates adverse reactions that often lead to outcomes contrary to the intent of the training. 

Compliance with training demands can generate what are called ‘tick box’ exercises. Participation isn’t motivated by a desire to learn but an intent to comply with a requirement. Given that training is mostly one-off and triggers no follow up, taking a compliance approach is usually successful in meeting a demand, but not changing beliefs, attitudes or behaviours. 

The absence of change is explained usually by the ‘problem’ being more difficult than anticipated or that the other person (with disability) wasn’t helpful or that there hasn’t been time/money to do anything. 

What can we usefully do?

We can ‘diagnose the problem’ accurately for starters. The problem with DAT is that it doesn’t/can’t work. The realistic solution is more complex – and hence costly in terms of addressing the need to do something.  This is a real problem because offering a low-cost solution to a complex problem will always be attractive. It is hard to move decision makers away from the attraction of a well-marketed ‘solution’ to a problem they are under pressure to address. 

The people part

People with disabilities are regular people who have some form of impairment which may necessitate a form of accommodation or adjustment in some settings. They may be experiencing discomfort, pain, or psychological distress – or not. 

They may not be very self-aware, defensive or even militant about their inclusion needs. This is a concern because extraverted people with visible disabilities can style themselves as disability advocates and create the illusion that they are representative of people with disability in general. They are not.

There is no magical insight conveyed by having a disability beyond direct personal experience.  There is an industry of very marketable people with disabilities representing that they can deliver effective training. They might be entertaining but it is unlikely that they ever conduct an effectiveness audit on their work. 

What they rarely, if ever, do is facilitate conversations (or relationships) between people with disabilities and the people who need to understand their needs. This is because these conversations must be ongoing in some form, and this isn’t an attractive option because the skillset is different and the role less attractive.

The environmental part

A disability might be expressed in a particular environment or setting and not in others.  An adjustment to a physical environment might require construction or moving furniture. A social environment might require adjustments to sound or lighting or the number and behaviour of people present. A temperature adjustment might be necessary. 

You don’t train anyone to be aware of the spectrum of options but educate about the need to ask whether anyone has a concern or create awareness of the right for a concern to be expressed. It is then possible to coach in confidence and style of communication.

The disability part

The range of disabilities is huge, as is the variety of expression. We can build a general understanding by taking broad categories – mobility, vision and hearing are the most common. Age-related disabilities in an area often ignored because ageing is seen as a separate category.

It is impossible to ‘train’ much beyond focusing on a specific disability type to a limited degree in a few sessions. And this is better done in conversations with people with that type of disability over time through mutually respectful conversation – as equals.

It is possible to educate about the scope and complexity of disabilities and help participants to identify their specific areas of knowledge needs. Then there is the opportunity to coach on how to refine the development of knowledge and insight.

The political part

There are some contemporary trends in disability politics worth being aware of. The Disability Pride movement expresses a strong assertive approach to ‘demanding’ inclusion rights are honoured. This may result in what can appear to be a needlessly militant attitude. 

There is also a trend toward self-diagnosis of neurodiverse conditions like ADHD and autism. This could lead to problematic interactions. 

The political dimension isn’t a major concern, but it helps to be aware of it because an adverse interaction with a person with a disability could trigger an anticipation that other people with disabilities will behave the same way. They won’t – but some may.

It is important to remember that people with disabilities aren’t inherently articulate, militant or insightful. They are regular people with some kind of impairment that might be an issue under some circumstances. Their disability isn’t ‘always on’ as an issue.

What are useful ways of thinking about Disability Awareness?

• Develop a general understanding of disability. 
• Understand the cognitive and motivational limits of developing awareness of disability and frame your need to know accordingly.
• Support a culture of sensitive communication – it’s about mutual understanding. 
• Create an intentional culture of inclusiveness in which people with disabilities feel safe in saying what they need.
• Develop a sensitive, honest and confident response to those needs.
• Create opportunities for shared and ongoing conversations of mutual positive regard. 

I am a huge fan of PurpleSpace – an organization dedicated to supporting employees with disabilities. They work with organisations, helping them to engage with staff with disabilities, but do not offer DAT in any form. Instead, they say “We believe that the only real way for employees and employers to build disability confidence is from the inside out…. It means helping employers to learn about building inclusive cultures directly from their own disabled colleagues.”

Here’s an excerpt from their brochure, Building Disability Confidence:

“We are all about ‘Networkology’ – the art and science of building great conversations through networks & resource groups to support inner confidence and drive cultural change.

Our clients told us that for too long they had over-invested in employee assist programmes, external training, occupational health providers, external consultants, membership trade organisations, segregated recruitment

campaigns, sponsorship of award and recognition schemes, benchmarking tools only to see no impact on the visibility of their own purple talent and disabled colleague engagement scores. (My bold)

So they come to us in order to re-align their spend, better invest in their internal ‘cultural change agents’ and make a step-change in the quality of internal conversations about building inclusive workplaces.”

It was the PurpleSpace CEO, Kate Nash who inspired me to transform how I led my department’s Disability ERG and turn it into a highly effective ‘cultural change agent’. What applies to organizations also applies to communities.

Conclusion

There is a general commitment to Disability Inclusion with goodwill on both sides.  It is important that awareness is a two-way flow and that the demand to be aware isn’t placed solely upon those providing services. 

People with disabilities aren’t necessarily passive recipients of services in their favour but members of a community or workforce which has limits and flaws as well as aspirations and ideals. Many people with disabilities can (and prefer to) articulate their needs and their hopes and expectations as a conversation rather than a recitation of demands.

There is a sense that people with disabilities have a prickly sense of entitlement about their rights. Maybe some do, but most are cool about having open conversations about what is genuinely doable. Ignorance and neglect aren’t the same as issues about intent, capability and capacity to meet a need. There may be a lingering sense of hurt for some – and trust or respect issues to address – but they can be worked through when there is evident goodwill.

We have a shared need to become more aware of the reality of living with a disability in our workplace or community so we can do our best to meet needs for accommodation or adjustment. 

When that need is expressed by an organization which expects to pay for meeting the need there is a willingness to accept ‘solutions’ that come at a cost that is affordable. 

There is a fundamental difference between solving a human problem and solving an organizational problem. This, understandably, isn’t going to be a high priority concern for decision makers whose priority is to comply with demands from on high. 

I am not saying there is any intentional or callous disregard for the human dimension – just that there is no personal sense of commitment. This is a fundamental problem with training in many settings. It is often about compliance with requirements, abstracting real people as elements of a problem – often to the extent that the person with disabilities is seen as ‘the problem’. What is lost in all this is the empathy and authenticity we need to keep our perspective on what the actual problem is.

When that happens, we craft a need for ‘training’ because people with disabilities have become a problem in general rather than people with specific needs which could be inquired about with sensitivity and respect – directly.

Developing Disability Awareness should be about fostering Disability Inclusion through person-centred engagement with the people who best know their needs. It’s about building relationships between decision makers and service providers and people with disability. There is mutual interest and there should be mutual trust and respect. There is no need for a representative ‘expert’ to train anybody.

Introduction

It is very easy to forget that living with disabilities in Australia or the USA or Europe grants us privileges that are not open to the many living where governments do not provide funding and community infrastructure doesn’t create accessible options to participate in community life. 

A few years ago (2023), I helped a friend with a few things while she was volunteering with YPK Bali. I wrote a blog post about YPK shortly after and republished it not so long ago. YPK seems to concentrate its vital work on children with disabilities to give them a fair go and a decent life.

Yesterday I got an email from YPK featuring the July edition of their newsletter, Insights. It provides an update on what’s been happening over the last 3 months. It was a humbling read.

Below I have taken some brief excerpts from the newsletter to convey the flavour of what YPK does on very limited funding and with a great spirit. Please, take the time to sample YPK’s great work, and then read the full newsletter.

Empowering Therapists, Supporting Families with PUM Netherlands

YPK Bali welcomed two professional trainers from PUM Netherlands, Karin and Lisette, for a 5-day physiotherapy training held from Monday to Friday, July 7–11, at YPK’s rehabilitation room. The training aimed to strengthen the therapists’ capacity in managing children with disabilities.

From Bamboo… Hope Grows

The process – In a modest room at home, a child takes careful steps between two bamboo poles. Beside them, a parent stands close, offering steady support. These bamboo bars are more than just wood, they are a symbol of love, trust creativity, and hope.

Pediatric Check-ups for Children with Disabilities

As part of YPK Bali’s integrated services for children with disabilities, comprehensive health check-ups were conducted for 50 child clients.

Success Stories

From Therapy to Radio Broadcaster

Before graduating from YPK, we provided Gekta with the opportunity to intern as a radio host at Denpasar Public Radio. Currently, Gekta has officially graduated and is now working as a professional radio broadcaster in Denpasar City. We are proud to be part of her incredible journey!
Keep shining, Gekta!

From Therapy to Life’s Stage

Giri used to come to YPK only for physical therapy. He was quiet, and it wasn’t clear what his interests or talents were. However, since joining YPK’s education program last year, a remarkable transformation has taken place. Giri now arrives at YPK full of enthusiasm. His confidence has grown, and he actively participates in various meaningful and joyful activities. One of his favorites is the Music class, a traditional African drum class taught in an inclusive setting. Through this class, Giri’s musical talent began to shine. He can follow the rhythm, express himself through drumming, and perform with his friends at events. YPK’s education program not only teaches academics, but also gives children like Giri the space to explore, socialise, and find joy in learning.

The Voices of Volunteers

Meet Vlad, Volunteer Yoga Instructor at YPK

With a gentle and inclusive approach, Vlad helps the children connect with their bodies, practice breathing, and find calm through simple movements. We truly appreciate Vlad’s dedication in creating a positive, supportive space for our children to grow and thrive.

Meet Samuel and Cynthia

Samuel and Cynthia are students from Nanyang Technological University (NTU), Singapore, currently interning with us at YPK. Over the past 1.5 months, they have been supporting the Education Unit and contributing in many meaningful ways.

Meet Mirah, Saras, and Vira

We are delighted to welcome Mirah, Saras, and Vira who are communication students from Universitas Pendidikan Nasional (Undiknas), Denpasar. They who have joined YPK for one semester through the Merdeka Belajar Kampus Merdeka (MBKM) program.

YPK Activities Update

Nutrition Seminar & Plant-Based Cooking Class for Parents of Children with Disabilities

YPK Bali recently held a Nutrition Seminar and Plant-Based Cooking Class, especially designed for parents of children with disabilities. The event featured dr. Arie Purwana, Sp.A, who shared valuable insights on the connection between nutrition, children’s emotions, and behaviour. During his session, parents learned how diet and nutritional intake can significantly influence a child’s emotional regulation and behavioural development.

Learning with Joy: A Sweet Journey to Cocoa Land Bali

Children from YPK Bali recently enjoyed an educational visit to Cocoa Land Bali, a chocolate-themed learning destination. During the trip, they discovered how chocolate is made from bean to bar, explored the different types of chocolate, and even got hands-on experience by molding their own chocolate creations.

Recharge, Reconnect, and Return with Purpose

In early July, all the YPK staff and volunteers took part in our annual staff outing a special moment to recharge, reconnect with nature, and spend quality time together. Surrounded by laughter and good food, we enjoyed fun games, shared meals, and built a stronger bond as a team.

Together, we build a more inclusive future, today, and always. 

Conclusion 

YPK reminds me that I am profoundly fortunate to have acquired my disabilities here. I contracted GBS in 2008 and was a respirator in an ICU within a few hours. I was there for 3 months. Without that speedy response my ability to breathe would have deteriorated rapidly and left me with a worse level of residual disability or death as my muscles ceased to work.

The motive for this blog is the search for answers to the question: “Why is Disability Inclusion so hard?” I don’t mean this to be a ‘first world problem” – an awful term – but it is where I live. The answers to this question lie in human psychology and human organisations – and these tend to be globally consistent.

I don’t want ever to forget that Disability Inclusion is way tougher for so many people in so many places. Being passively sympathetic isn’t enough. I started making a monthly donation via PayPal in 2023. I am about to double it. I may go further, but I am on limited income these days, so I will assess the situation. I don’t mind ‘hurting’ a bit more to support YPK.

YPK must engage in a relentless quest for funding to survive. Please, take the time to reflect on your good fortune to be living where you do, and commit to even a small monthly donation.

Introduction

In April 2008 I contracted Guillain-Barre syndrome (GBS) which put me in hospital for 10 months and was off work for a total of 18 months. I returned to work with a major mobility disability – my ankles did not work as a means of keeping me upright and able to walk. I also had impaired grip in both hands and radically reduced manual dexterity. Living with these disabilities is a major pain in the arse. There are so many things I can no longer do. 

I do not like the term ‘disabled person’. I prefer a ‘person with disabilities’. Living with disabilities is part of my identity and while the physical impact has been catastrophic in many ways (I now must pay for things I once could do – like gardening and home maintenance at considerable cost). I do not consider disability to be a dominant element of my identity.  It is only one of its many facets. My personhood is intact and functioning perfectly well.

I have recently been exploring the postmodern and social justice politics of disability theory and related identity claims. They are bewildering to me. I have had to engage with them because they are now part of the social landscape. 

I had ignored them previously because I was focused entirely on addressing the functional priorities of disability. Now I am aware of them I will return to ignoring them because I have no use for them. But I want to clear on why.

I returned to work in late September 2009 and had a rough time adapting. My colleagues were great. They were supportive and kind. My management wasn’t so much. I was a novel problem to them, and I wasn’t treated with any real insight. Of course not. Staff who have acquired major disabilities and return to work expecting to pick up where they left off are fortunately relatively uncommon. In my 33+ years in the public sector I knew of only a few people who returned to work with some level of disability following a MVA whilst on duty.

My lived experience of disability has, from the outset, been about functionality. I spent 7 months in a rehab ward learning to move my body in a coherent way again. This was followed by a continuation of rehab at home for over 6 months – 5-7 hours of physio a day. My residual disabilities were the best I could get to.

Returning to work was all about functionality. The 90-minute train commute was awful and was followed by a 25-minute walk. Others could do the walk in around 5 minutes. Sometimes I caught a cab when the weather was a problem. At work reviving my bureaucratic brain was surprisingly hard.  I typed with one finger, sometimes two. 

In July 2010 I became a founding member of our department’s Disability ERG. In early 2016 I was voted in as Deputy Chair and when the Chair quit the department in November 2016, I suddenly found myself leading a diminished and dispirited ERG. The department had been undergoing major restructures which led to us losing over 50% of our members and the early progress we had made had dwindled to an almost imperceptible crawl. 

Up to that point the ERG had been a passive advisory body that met with HR 4 times a year. The meetings lasted all day. The venue was excellent, and the catering was very good. The meetings were totally managed by HR, and our role was to contribute thoughts, ideas and accounts of experience. It was a good process, about which I have no criticisms. But it reached the limits of its potential. We needed more.

I had always been an innovative problem solver so my response to the unmet need of my members was to get busy.  I was in that role for 3 years and 3 months and was very successful. I was invited to present at the Australian Network (AND) on Disability’s Annual National Conferences in 2019 and 2020 on the innovative work the ERG had done. I also coordinated the department’s participation in the AND’s Access and Inclusion Index in 2019 and designed its 2020-2024 Disability Inclusion Action Plan (DIAP). 

My focus was establishing the adjustments and accommodations staff with disabilities needed to be able to do their jobs in an accessible and inclusive manner. I also acted to foster greater inclusivity in the workplace culture. For me inclusivity had to be universal. We couldn’t demand inclusion while we were excluding others.

My engagement with disability started way back in the 1970s when I worked in psychiatric hospitals providing personal care in a hospital ward and supervising patients during day activities. I later worked in Veteran Affairs procuring aids and equipment for disabled veterans and processing applications for dental treatment. Much later I negotiated license compliance with aged care services and private and NGO disability accommodation services and workplaces. Then I coordinated state-funded health and community access services to residents of private disability accommodation services and then ran an emergency accommodation service for children and adults with disabilities for my region. If I wasn’t proving direct support, I was solving problems and coordinating service delivery. I also ran disability accommodation service procurement exercises.

In essence I dealt with people with disabilities who were in need of direct care or services or who needed adjustments to physical settings, technologies, policies, practices or attitudes and beliefs over close on 50 years. The really strange thing is that it was only last year that I realised that disability had been such a dominant theme in my career. 

So, my encounter with postmodern and social justice ideas about disability seem to have come out of left field. But that’s because my focus on functional concerns left no room for the politics. Hence the idea that disability is the performance of an identity that should be celebrated leaves me stunned. The argument that a person can self-identify as having a disability to be a member of a particular community completely perplexes me. 

I struggle to have an opinion because I don’t understand these ideas. Nothing in now over 50 years of engaging with disability has given me any foundation for comprehending this. I understand that maybe these days I am so focused on work-related Disability Inclusion that I have a narrow vision of disability. 

One of my principles has been that inclusivity must be the foundation of Disability Inclusion. We cannot be asking others to be inclusive of us if we are not extending that spirit of inclusion to others.  That means we must be inclusive of those who resist our efforts. We cannot blame or come into conflict with others who do not see things as we do. 

We won the moral right to seek inclusion from our organizations because of the legislation that has been enacted and the policies and programs put in place. But when it comes to individuals there is no compulsion enshrined in law. We have won permission to persuade, not to demand. I am now aware there is a Disability Pride movement that says its members demand that their right to be included is granted. Yeah. Good luck with that. 

Disability Inclusion is complex and difficult. This is precisely because it has no coercive power. We cannot compel, only persuade. And here I am talking only of establishing adjustments and accommodations – whether in systems or in the consciousness of those who have power over the systems. Not even the coercive power of legislation is sufficient to move administrators with any enthusiasm. They have ways of engaging what is often described as ‘malicious compliance’.  This isn’t necessarily an act of evil (thought sometimes it is). It sometimes has more to do with status protection and arse-covering. But resistance can also arise for many reasons that are sensible and proper – like a genuine lack of capacity. Efforts at coercion result in conflict and rarely result in the desired outcome. 

My disability functional theory 

I can’t ignore what is going on in the sense of refusing to acknowledge that it is there and trending and a genuine source of passion and meaning for some people. But having now made a very decent effort at understanding what is going on I have decided that it’s nothing of any use to me.

Below I want to articulate my theory of disability – which I have had to make up in an effort to understand why I am responding as I am. I need to know that its not just reactive gatekeeping and unreflected bias.

A disability is an inability to do something because of a condition of mind or body that you were born with or acquire and concerning which you need some kind of assistance or accommodation to engage in a desired activity. A disability is, thus, the impairment of one’s functionality. 

In a work context there are several responses to a person with a disability which impacts their capability to perform their role:

• Adjust systems, processes, procedures, devices and physical spaces along universal design principles to remove unintended impediments to equal accessibility. 
• Modify any of the above to meet individual needs (subject to ‘reasonable adjustment’ provisions). 
• Influence the behaviour of organizational leaders to ensure demonstrable compliance with organizational policy, standards and principles. This will include accountability mechanisms. 
• Influence the organization’s workplace culture to promote, reinforce and reward inclusive behaviour at individual and work team levels. 

Disability is context specific. If an adjustment or an accommodation is not required, the disability ignored. That is to say that if a person’s capacity to act is not impaired in a certain context no disability is relevant. 

I don’t know whether the term Functional Disability Theory (FDT) exists anywhere. A quick internet search didn’t deliver anything suggesting it does. So I have invented it to make my argument. FDT has the advantage of preventing a person’s impaired capacity from becoming a persistent dominant element of a person’s identity. 

In a sense this embraces the logic of the Social Model of Disability (SMD) by acknowledging and addressing ‘disabling’ environmental factors to the extent possible. But it also allows that not all disabilities in all contexts are relevant to a person’s identity. 

FDT isn’t a philosophical or a political theory   It is a practical commitment to what works to address real needs of people whose disabilities adversely impact their ability to share life opportunities with others on an equal footing. In this case the context is the workplace, but it could apply equally as well to any purposeful activity. 

I have been arguing in this blog that Disability Inclusion is a skilled practice – a professional pursuit. Its moral foundation is attested and done. All subsequent activity is persuasive, involves the formulation of strategies or concerns relating to the design and implementation of solutions. There is only one objective – to help an employee with disabilities to give their best work with dignity and equity. 

By taking a purely outcome based functional approach a Disability Inclusion practitioner commits to acting to assure that an organization’s behaviour is aligned to its obligations, principles and commitments. 

At no stage of the working out the FDT in practice is there any form of coercion. At an organizational level responsibility and duty are already established. On an individual level persuasion is the only tool to be employed. 

A key element of the FDT is that a moral right to be included isn’t enforceable by coercion but must be freely recognised and honoured. A moral right isn’t a legal right. Neither the Australian Commonwealth Disability Discrimination Act 1992 nor the New South Wales Disability Inclusion Act 2014 seek to impose obligations upon citizens. The Disability Inclusion Act 2014 positively affirms rights. For example, under General Principles we will find: (8) People with disability have the right to live free from neglect, abuse and exploitation. But there is no positive requirement imposed upon private citizens to ensure this right is upheld.

Ultimately FDT is about fixing or solving problems experienced by staff with disabilities in a direct manner. 

It isn’t the only disability theory that may be held to be valid and valued. Adherence to one theory does not invalidate or negate another. It is simply rational to operate consistently with one theory. In my case I work within a workplace context. Here alternative theories are not a good fit for achieving desired outcomes. 

I make no pretense to be a theorizer. The FDT has been an instrument that has helped me clarify how I understand my approach to Disability Inclusion. It is not intended as a theory to be promulgated and defended. Its purpose does not extend beyond its clarification use.

Disability Identity is context sensitive. 

I have a rough list of 20 attributes which are part of my identity.  All of them constitute me. They are always present. But they are not always apparent in, or relevant to, every situation. 

For instance, when I am sitting at a cafe table I keep my crutches in easy reach. But I don’t need them at the table. The fact of my disability might be inferred by the proximity of the crutches but neither its duration nor nature are evident – and if I am not asked, I don’t tell. 

I drink from takeaway cups because my grip disabilities make holding a regular ceramic cup or mug neither practical nor safe. If I am asked why I am using a takeaway cup I will say why. But I will not offer an explanation otherwise. 

Beyond any functional context disability is, for me, irrelevant. If I need an accommodation or an adjustment I will ask. If I am asked about my disabilities I will tell. 

I noticed that in the department’s Disability ERG the founding members didn’t talk about their lived experience of disability unless it was to convey something about how it impacted their ability to do their jobs.  That was our focus and context. 

When I became ERG lead, I had to ask members about their lived experience at work so I could understand their concerns, but this rarely expanded into more personal areas. We were work colleagues and ERG members first. Our purpose for getting together was to address accessibility and equity issues experienced by staff with disabilities – purely functional. This was because we all knew what it was like to not have access or equity. How we lived with our disabilities in our personal and private lives wasn’t something we felt moved to share. There was no shame or uncertainty, just disinterest in the context we were in.

Friendships between ERG members were formed, of course. I know the experience of living with a disability in a personal sense was shared because of the friendships I formed. But our activity, as ERG members, was firmly workplace-focused because outcomes that reduced member suffering were what our mission was about.

My problems with theories about disability. 

Theories about physics work because we engage with the world in a way that is substantially consistent. But this is not to say these theories are the last word in how the world works. We have progressed from Newtonian physics (which still works) to quantum physics (which also works) – without having fights about which one is okay. 

Theories on social justice are another thing entirely. For starters they are not ‘scientific’ but social and hence subjective and political. You can be deeply involved in the welfare of others without the slightest notion of the storm of theoretical passions raging in the background. 

My troubles started when I had a conversation with a person who said they had ADHD and hence had a disability. My reflex was to want to know what that meant. The context was workplace related, so my thoughts went to functional concerns about adjustments and accommodations. The conversation didn’t progress, so I was left wondering. 

The next disruptive experience was coming across a mob calling themselves Disability Pride. Why? What was this about? It was demanding inclusion as a right. This was neither civil nor practical in my view. 

I had obviously been inhabiting an innocent fog for the past 6 years, longer in fact, as I discovered. 

I needed a quick education and so I read 4 blog posts from Mad in America and 3 books reviewing the social justice and postmodernism movements. Wow! There was some interesting and worrying stuff going down – and I was grateful to have been ignorant of it. 

The social justice movement has done some fabulous work in changing how we live our lives. But then academics have gotten involved – and this is where things have gone in a direction that I cannot feel any enthusiasm for. 

Now I have no objection to academics inquiring into, and theorizing about, whatever they like. Most of their efforts remain in-house and are read by very few people. But some of that work goes feral and ends up like cane toads or rabbits in the social landscape – a good idea at the time but rued with hindsight. 

I should note that most (probably 60%) of the non-fiction books I read are by academics whose work I esteem highly. I read a lot. I just started my 500^th non-fiction book since December 2016 (its July 2025 as I write this) – so it is interesting to me that it has been only recently that I have come across book about ‘Theory”. Here I am talking about papers rather than books – and especially ones that resonate social justice activists looking for arguments that support their passions. 

This wouldn’t be a problem if the theorizing was taken to be inspiration for insights that further the social justice cause. But what has happened is that theories have become political dogma that enshrines some really quite unhealthy emotions that then leads to intolerances, fights and schisms. It’s very similar to the conflicting theologies of historic Christianity. 

The Social Model of Disability (SMD)

The SMD is an example of how a theory has become a political position that isn’t as useful as it started out being. Now, if you even acknowledge the medical model of disability you are treated with scorn in some quarters. 

The original idea that many people with a disability are deeply disadvantaged because the way our built environment was so ableist was a critical insight that led to such as ramps being included in buildings and parks as well as a host of other changes to our shared spaces. I have been a member of my local government’s Access Reference Group for 4 years and I have seen an impressive commitment to assuring accessibility and inclusion.

But some now argue that the SMD is the only model permitted. In the book Cynical Theoriesthere is a description of an argument that deaf people are disabled by society because the community privileges hearing people and does not give deaf people an equal go by requiring everyone learning how to sign. You can see that in one way this kind of seems a fair enough argument, but on a functional level it’s completely silly. Teaching everyone to sign isn’t practical – even if they assented to learning. 

The Medical Model of Disability (MMD) acknowledges the simple fact that a disability has a diagnosable element to it. But this doesn’t actually exist as a model in its own right. It’s just a foil in the SMD which has made a host of assumptions. We can’t separate diagnosis from lived experience of disability in any setting – social or communal. One leads to the other. Except now the MMD has been replaced what I will describe as the Self-diagnosed Model of Disability (SDMD). It’s about how you feel, not how a medical practitioner assesses you. 

I have a bit of sympathy for this perspective – especially when normal emotions can be given a medical name and become a ‘disabling’ diagnosis. But to me this should be about the SDMD not only restoring the power to see oneself outside the medical diagnostic framework but denying any notion of disability. Instead, it by-passes the MMD and goes straight for a disability designation as if a medical assessment in an impediment to getting to the destination. 

Instead seeing disability as an adverse diagnosis, it now seems preferred. It confers some benefit that presently eludes me. From my functional perspective the only benefit is activation of entitlement to the support to receive the accommodation and adjustments you need to give your best work. Regardless of your personal convictions, that’s a needs assessment that should be made by the people responsible for arranging (and paying for) the needed accommodations and adjustments. This also applies to the Disability Inclusion advocates supporting their claim. How the SDMD applies outside the workplace context isn’t something I am currently concerned about.

I don’t like the SMD because it is poorly thought through. The point that many places are inaccessible because of design has been well taken and efforts at redressing that inequity are happening all over the place. Progress is slow because there is competition for resources for causes considered to be equally meritorious. That’s a fair point to debate, of course.

The roots of this accessibility inequity have arisen from historical and cultural causes that reach back millennia – to ideals of blemish-free perfection – which linger still in our psyches. And they have nothing to do with intentional repression. They are cultural rather than political – although the business of removing the inequity is very definitely political. But that shouldn’t be interpreted through a philosophically partisan lens, nor assumed to be the consequence of intentional heartlessness. 

The biggest problem with the SMD is that it does not distinguish between obligations imposed upon organizations via political power – e.g. via legislation, policy and programs – and the liberty of individuals not to comply with demands for inclusion. Can you imagine a government making a law that says all citizens must learn signing and maintain it at a sufficient level to ensure that they could communicate with a deaf person at an appropriate level? 

A model of disability that blames everybody else for not being inclusive is useless because it can’t deliver benefits and can only cause resentment. This kind of approach to Disability Inclusion will deflect attention away from goodwill efforts to make progress in arguing the case for greater inclusivity. We must remember that budgets which provide the resources to create the changes to accessibility and equity aren’t allocated with compliance with (all) legislation in mind – but on capacity to access the revenue needed. 

Its fair enough to make the case that more can be spent on Disability Inclusion but if you get into a political argument asserting that honouring all rights is paramount, you will be vulnerable to the same argument being waged by more influential proponents of other causes. Better to engage in persuasion to ensure a fair allocation. Our appetite for social justice is far greater than the pie we expect to feed it. We must identify our priorities calmly and strategically and not propelled by a storm of unresolved angst.

The problem with performance of an identity

Cynical Theories describes how, in the field of Disability Studies, there is a belief that disability is a ‘performance’ to be celebrated and that efforts to remediate a disability (the MMD) are oppressive. This is pretty much akin to criticizing me for trying to ‘fix’ my disability via the MMD solution of buying Canadian crutches. 

I was inspired by the dancer and choreographer Claire Cunningham who uses Canadian crutches in her performances who observed that disability is part of the spectrum of being human. She didn’t want to be ‘fixed’. But she did want to take advantage of technologies that could make her impairment less disabling – so she could dance.

The book also describes how, in the spirit of post modernism, self-diagnosis as having a disability in order to join a community identity is a good thing because it is disruptive of social norms. This reduces disability to a performance and an identity to be celebrated – a source of pride. 

On a personal level I find this profoundly offensive. Cynical Theories makes an essential point here. It is not the disability that is being celebrated but person. This is no better illustrated in the Special Olympics. It’s still called “Special” – a now way out of date term which I hope is more a marketing term than a reflection of a philosophical position. It is the spirit and determination of the athletes that celebrated. Not their disability. 

But maybe this is the point. The heroic status of an Olympian with a disability can be shared by all people with disabilities and those who identify as a person with a disability. No? Personally, I have no sense of reflected glory from an Olympian with a disability – no matter how much I admire their achievements.

I must be blunt here. I am also of an age when I should stop fantasizing about being younger, fitter and better looking. My 13 months of desperate physio gives me immense respect for athletes with disability and the work they put in to recover and then get that good. But I am more of a nerd. I worked that hard on my physio because I knew what would happen if I didn’t – I couldn’t be nerdy in an effective way. Yeah, a purely functional response. I have no interest in putting in the awesome effort it takes to be an Olympian. My focus is elsewhere. I can’t use Stephen Hawkins as a hero model because I am nowhere in that league.

I live with disabilities that radically changed my life. In one respect this change was catastrophic. In another I must confess that I think I am better person. I prefer the post GBS me to the pre GBS me. Acquiring a major disability is likely to trigger deep philosophical reflection. I was 3 months in an ICU paralyzed from the neck down and I did a lot of that kind of reflection because my future was very uncertain.

Conclusion

I know Shakespeare said “All the world’s a stage, And all the men and women merely players; They have their exits and their entrances; And one man in his time plays many parts… 

In this context, yes, disability is a performance – one of the many parts we play in the totality of who we are.

I think there’s a trend toward ceasing to take disability literally – as an impairment to an otherwise shared human ability that impacts one’s capacity to share the experience of commonly accessed activities. I don’t know why this is happening, but it does appear that ‘protected’ identities (eg LGBTQI+ and Indigenous) are subject to the same trend. It seems like a cultural phenomenon that we haven’t yet wrapped our heads around.

Some disabilities are not catastrophic. Being tone deaf or colour blind may wreck career dreams but they do not dominate how one lives one’s life. Other disabilities are life-defining. When I was working in a psychiatric hospital, I encountered a 12-year-old who was born blind and deaf. She was rescued from a shed where she seemed to have been secured when her family had gone out. Who knows how they cared for her. Maybe locking her in the shed was the safest thing to do at the time. 

What I did discover was that in the hospital she was permitted no loving care, no intimate parental connection, no loving sibling. The hospital’s ‘care’ was emotionally remote and clinical. It was, by any real measure, cruel. I quit my job over this child. I can’t see the idea of performance fitting her fate. Neither is this an identity one would want to assume.

I make no apology for ignoring the theories and politics of identity being applied to disability. I am completely focused on functional concerns that make life and work easier for people with disabilities – and that’s what I am going back to focus on now. I am somewhat grateful for the journey into a different way of seeing things – though I feel as if I am a tourist. It’s not how I want to feel, think or live.

Introduction

There’s a passage in a book on the importance of free speech that seemed to me to encapsulate our current situation: “We would rather live in a world where love and compassion triumph over hatred and bigotry. We believe that we have a responsibility not only for the wellbeing of ourselves but for those around us…All of which amounts to a substantial bedrock of shared values on which we can build.”

My attention was captured by the words “shared values”. This is further articulated in a Wikipedia entry: Personal values exist in relation to cultural values, either in agreement with or divergence from prevailing norms. A culture is a social system that shares a set of common values, in which such values permit social expectations and collective understandings of the good, beautiful and constructive. 

Note: “such values permit social expectations and collective understandings”. Values are not a code of conduct. In short, values what we ‘care about’ – what we expect and understand. A code of conduct articulates the actions to be taken when we ‘care for’ other people. Here I don’t just mean caring for a person who is dependent because of a disability. I mean caring for people in general.

It is interesting how the word ‘care’ has become both inherent in how we feel and remote in how we think. There’s a distinction between the personal and the social dimensions. We ‘care for’ on a personal level and we ‘care about’ on a social level. We can do both, but so many in the human services don’t progress beyond ‘caring about’.

This is in our nature. It’s not a flaw, but it is an impediment when it comes to translating expectations and understandings into caring work that delivers positive outcomes to people who need our help. We need to understand why this happens.

Our culture has evolved over the past 60 years or so to value inclusivity as an ideal. This is hugely important because it means that greater inclusivity as a reality continues to remain possible. 

But this idealism doesn’t flow into action. It remains in potential as part of our culture’s affirmation of its values. Most well-educated and well-paid people hold inclusive values. But they do not act as inclusively as they think and feel. 

There’s nothing remarkable about that. This applies to most of us as an inherent part of being human. We are never as good as we imagine we are. That’s just how our psychology works.

Below I engage in a reflection on what it means to ‘care for’ and why establishing our own sense of what ‘care’ really means can crystallize our thoughts on our values and our capacity for action. When we have this understanding, we can make better choices and what to believe and what to accept as okay.

The disparity becomes obvious

My introduction to disability was working in psychiatric hospitals in the 1970s. I had to bathe and feed young and older people with profound disabilities. I also change their diapers and wipe their backsides, sometimes after having to playfully wrestle more boisterous ones to the floor (they thought it was a great game). These were humbling experiences. I was later responsible for managing the design and delivery of services provided to residents of private accommodation services. This sometimes required getting to know the backgrounds and needs of over 30 people with mental illness and intellectual disabilities. 

This ‘hands on’ experience made me aware of a deep disparity between ‘caring about’ and ‘caring for’. These are two different forms of caring with very different consequences.

This situation is nowhere better demonstrated than in my experience of working with funded disability service ‘contract managers’. As a team leader I had responsibility for more complex matters involving NGO service providers. This responsibility came with the job and was not dependent on any related experience. 

As it happened, I had substantial experience in providing hands-on care, negotiating with disability service providers and resolving complex issues. I had come into my role by way of a restructure. The role was vacant and, because it was at my grade, I was assigned to it. 

I was perplexed to discover that the ‘contract managers’ had no previous connection with service providers of any kind and had zero exposure to people with disability. Apparently, no such experience was required. 

Contract management, when done properly, requires an understanding of the service area and insight into the service provider. What was being practiced here wasn’t contract management at all. It was contract administration. Or rather it was administration with some contract-related work included. 

You can’t contract manage without the necessary insight into the service and the service provider. My employer had a culture of contract administration because it did not recruit for the skills needed for contract management. It didn’t do this because nobody up the management ladder had any experience of service provision or service providers. Nobody thought it necessary.

But still a culture of ‘contract management’ prevailed because that is what people believed they were doing. Those who saw themselves as contract managers did so with pride. They were doing a good job supporting people with disabilities. They sincerely believed this. I have no criticism of them. They were genuinely nice and caring people. The fact that they weren’t doing what they thought they were doing doesn’t diminish that. 

Who does our value system primarily serve?

Until a few weeks ago I would have said, in response to this question, that it served the people we ‘care for’. But, in fact, that’s only a lesser part of the story. 

Frontline workers in the human services area are paid less than administrators even when those frontline workers perform work that is more demanding and requires higher skills. You have to get into highly credentialed ‘frontline’ workers before you see status and pay being equal to administrators. For example, a psychiatrist and an executive director may have a comparable social status. But a child protection worker with a degree will be paid less than an administrator with no degree. This is even though child protection is an immensely difficult and challenging role. 

Caring about people with disabilities is a great thing. There’s a lot of it about. We are a caring culture, genuinely so. As lead of a Disability ERG, I experienced the goodwill of my department’s 25,000+ staff. Because it was present and apparent I was able to make good things happen for my members. But that good will is a pool of potential that must be skillfully tapped. This is about converting ‘caring about’ into ‘caring for’. 

Goodwill organizes itself into a cultural expression which is self-reinforcing. But this is something that a good culture does inherently. It does not, however, transform that ‘caring about’ into ‘caring for’. The people who do that have a direct connection with the people who receive the service – and they are relatively fewer and also tend to be lower status. 

People with frontline ‘caring for’ expertise don’t often transition into administrative roles. This isn’t a flaw so much as a bias. Once the disparity in status is established lower status people can be thought to lack something necessary to be an effective higher status administrator. 

So, ‘caring about’ can become a high-status domination which looks down (consciously or unconsciously) on ‘caring for’ as less important. This can seem paradoxical, but legislation, policies, programs and the like are important from a certain perspective – they are the enabling instruments of public funding. They can be seen as more important too – more important than the ‘caring for’ work.

The issue here isn’t that ‘caring about’ isn’t important. Rather, that because this is a high-status thing, it is often seen as inherently superior to ‘caring for’. Indeed sometimes ‘caring for’ can be seen as a residual function after the administrative priorities are catered to. 

There is also a natural tension between ‘caring about’ and ‘caring for’. In status terms this is something akin to the master/servant relationship. The master needs the servant to do essential things. The servant needs the master so they can do those things. But the servant doesn’t need the master on their own account. 

We have a natural bias toward high status in a social context, so it’s something we need to be aware of, so that we don’t become trapped by it. Early on as Disability ERG lead, I met with ERG leads from other agencies. I was hoping to set up a network of Disability ERGs across the sector. This effort failed because I didn’t understand the strength of status disparities. Colleagues from other agencies with union backgrounds saw their ERG’s role and status through unionist eyes. They had no relationships with senior executives because their perspective was rooted in contestation. My approach was collaborative, and I didn’t have skills to resolve the disparity. 

An effective Disability Inclusion change agent stands between ‘caring about’ and ‘caring for’. This is a high skill role of change leadership and persuasion. It is the future of DEI. 

Why does any of this matter?

One of the chief reasons that Disability Inclusion is so hard is that we don’t understand it to be an aspiration that we must evolve toward. We imagine that, in effect, ‘caring about’ will transmute into ‘caring for’ by some form of moral magic. It won’t. Our psychology and our culture mean that it will remain an aspiration while we work on the evolution of both our individual awareness and our community.

In April 2019 the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (more commonly the Disability Royal Commission – or DRC) commenced. Its report was published in September 2023. It had 222 recommendations.

The DRC was thought necessary in a culture that espoused deep commitment to people with disabilities. Not only were federal and state funds committed across the nation to disability services, but the National Disability Insurance Scheme (NDIS) was generously funded and open to public claims from 2016. And yet, 3 years later the DRC was thought necessary.

Australia should have a proud and unenviable record on Disability Inclusion. The fact we have the NDIS and that we held the DRC are both testimony to deep social values. So, what went wrong- if anything?

The worrying reality, for me, is that across the country, in each state and territory, governments (and their bureaucracies) have prepared reports in response to the DRC report. The same ‘carers about’ have been asked to define how to do ‘caring for’ better. Is that going to work?

The limits of government caring

If we don’t understand what’s impeding the realization of our aspirations, we will continue to do what doesn’t work. That serves nobody’s interests other than some of the ‘carers about’who will have a forever reason to write reports that will be ignored (and most likely misdiagnose the problem anyway) and develop plans that nobody will follow.

I am not saying that good things are not being done, but its patchy and uneven and a lot of effort is being applied to no good effect. In NSW, for example, membership of the Disability Council, supposedly a community representative body, is determined by a government department. Of the current 12 members 8 have substantial government experience, 2 are leaders of disability related organizations, 1 is a senior academic, and 1 is what I’d characterize as a ‘frontline’ activist. All members identify as having a disability.

There’s a myth that people with disability are inherently ‘carers for’. This isn’t true. We also can also be disconnected ‘carers about’. The Council’s 2022-2024 plan is instructive reading. I like the paragraph under the heading Voice:

“The voice of people with disability is not heard sufficiently or given appropriate weight generally, particularly concerning service design and delivery, and in policy and program development. The Council is interested in ensuring processes for seeking input and feedback are genuine so that the concerns of people with disability are heard and acted on immediately, particularly regarding issues or complaints about service delivery.”

Note that “The Council is interested in ensuring” Here is the passive language of ‘caring about’, not the active language of ‘caring for’ – The Council will ensure. Not only that, being interested in something expresses only a vague intellectual concern. But its worth noting that the chances that the Council members actually wrote this plan are very low. It is far more probable it was written by a bureaucrat with no disability.

Plans like this make it harder for things to happen because it’s not really a plan to do anything – only to think about doing something, only appearing care. If it sounds good, it gives the authors and the approvers a serotonin buzz – and job done. The symbolic act of ‘caring about’ has been performed and those involved feel good, satisfied and content. ‘Caring for’ isn’t their job. It’s enough to acknowledge that “The voice of people with disability is not heard…”

Note again that it’s not “The voices of people with disability are not heard…” Again, here is the passive voice articulating a fantasy – that people with disabilities have only a collective voice. They are not acknowledged as having individual needs. 

The people who write and endorse this guff do not ‘care for’ people with disabilities. This is the spirit that dominates how Disability Inclusion is seen and responded to. Being on the Council is high status. It’s not a foundation for action, though. 

Conclusion

It is important that when somebody says that they ‘care’ we don’t imagine they and we mean the same thing. If we do and their actions do not match our anticipation the resultant cognitive dissonance can cause distress. 

I have worked with some great DEI managers who have demonstrated deep and genuine commitment to ‘caring for’. I have also worked with senior executives whose commitment to ‘caring for’ was impressive and inspirational. But they are few. They have balanced their ‘caring about’ and ‘caring for’ roles deftly and without compromising either.

Those who are deep ‘carers for’, who can effectively drive Disability Inclusion, are exceptions. I don’t mean that they are exceptional as in being better or superior, but in the sense that they have a combination of personal attributes and experiences that are unusual. 

The tension between ‘caring about’ and ‘caring for’ isn’t an evil vs good contest. It is a tension between two states of energy – think water ice vs liquid water. The change agent’s function is to melt the ice and direct the resultant liquid to best effect. This takes skill and care.

I am talking with a friend who, after decades of direct hands-on care in their chosen human services fields, is experiencing intense psychological anguish. They have transitioned into service provision administration and with their background they’d hoped to have contributed to improved service delivery. But that hasn’t happened because more senior bureaucrats do not share their perspective or sense of urgent mission. The intent to improve services has become entangled in a web of abstract excuses for why service improvement is taking so long. Here is a painful clash between the controllers who ‘care about’, and my friend who brings their deep experience of, and commitment to, ‘caring for’ to what should be a shared mission – but isn’t.

In We Were Never Woke author Musa Al-Gharbi uses the sociological term ‘symbolic capitalism’ to describe well-educated and well-paid people who sincerely believe that their commitment to a value system is noble – and sufficient. This is an immensely useful term to help us remember that symbols do not morph in concrete actions, but they are still a vital part of our culture. We need symbols of caring because they enrich us, but we must never mistake them for the real thing.

Introduction

We Have Never Been Woke: The Cultural Contradictions of a New Elite by sociologist Musa Al- Gharbi is a confronting read. The author introduced me the idea of symbolic capitalism. Here’s a summary of that idea by the author from the Columbia University website:

The early 20th century saw the rise of a new constellation of social and cultural elites whose wealth and status was tied to the production and manipulation of symbols and rhetoric, images and narratives, data and analysis, ideas and abstractions, drawing from Bourdieu, let us call them symbolic capitalists. From the outset, symbolic capitalists have defined themselves as champions of the desperate, vulnerable, marginalized and otherwise disadvantaged in society. (My bold)

Here’s a quote from the book: (I don’t know the page number – I have an audiobook and it starts around 1hour 56 mins in.)

Nonetheless it is not clear what, if any, good is actually being accomplished by this ever-expanding constellation of social justice sinecures beyond providing practitioners with gainful employment. Many of the programs associated with these DEI roles such as diversity training are demonstrably ineffective with respect to their stated goals. (My bold)

This is a common assessment from critical observers of, and researchers into, DEI and ERGs. What does this all mean? 

This book converges several themes that I have been exploring recently into a disturbing argument – that there is no real intent to change the circumstances of people subject to discrimination and exclusion – just to perform as if there is. It sounds so darkly cynical it is difficult to credit it with any validity. But wait. The argument isn’t that there is a conscious callous intent to behave deceptively. Neither does the argument assert that everyone is so inclined. There’s a lot to unpack.

Why bother? On its face the book is competent sociological research. I think it is telling us something important and we do need to engage with what that is. What interests me is that the author’s argument is in sympathy with the essential themes of my own research. So, I want to explore what the implications of the argument are in the context of that inquiry.

What do we think we know?

There are several propositions I want to assert, based on my own direct experience and research (including this book). They are:

• Disability Inclusion is hard to do. (my direct experience)
• DEI and ERG activity frequently fails to deliver the outcomes that are intended and desired. (multiple credible researchers)
• DEI practitioners and ERG leads often lack contemporary knowledge of relevant current research, and resist acquiring it. (my direct experience)
• Disability Inclusion professionals seem to lose passion for getting outcomes for people with disability. (other people writing on the field eg Alberto Vásquez Encalada)
• ERG leads are reluctant to develop a skill set that makes them effective. It takes commitment and effort. (my direct experience)
• Senior organizational leaders seem to have no interest in ensuring their DEI teams and their ERGs are capable of delivering desired outcomes. (my direct experience)
• Organizations, DEI teams and ERG leads are not really about addressing the needs of their ‘diversity groups’, just appearing to care. (the book)

These issues aren’t confined to DEI but embrace the spectrum of social justice and human services concerns, including the welfare of indigenous peoples and those dependent on social housing and mental health services.

What’s the difference between being sympathetic and actually doing something?

I have been involved in human services nearly the whole of my working life and I must say that at least 60% of people in that field have been inept, often incompetent and, sadly, also corrupt and cruel.

So, Al-Gharbi’s observations are not startling to me. I can see why his idea about symbolic capitalism is attractive – get the job and perform as if you care. Why else would failure to succeed be so routine?

Yes, the job is incredibly difficult. I have detailed why I think this is so in this blog. I remind readers that my quest is to answer the question, “Why is Disability Inclusion so hard?”

It is inherently hard because it is about changing human behaviour. It takes knowledge, skill and determination to succeed – and a decent amount of good fortune too. Consequently, the difference between performing caring about outcomes and actually delivering them comes down to a willingness to acquire the knowledge and skills needed, and then act with determination. Al-Gharbi asserts that this is absent in so many practitioners. They will perform caring but never transition into the commitment needed to deliver real outcomes.

This is the thing about symbolic capitalism. It is self-interested. Performance of the symbolic acts affirms one as a member of a critical in-group. Make them believe you care so that the in-group is protected from accusations of not caring. That is, not caring enough about the in-group, not the putative recipients of services.

And here’s the paradox. By attempting to deliver real results you risk exposing your erstwhile in-group to the hazard of having to actually do the hard work of making good things happen. That isn’t the purpose of DEI, really. This is why Al-Gharbi says this is a symbolic economy. The trade is in symbols, not actual social justice.

It is critical to understand that there’s nothing aberrant about this. It’s not morally okay, of course. But it’s just not outside human nature. We need to be vigilant that such a risk exists and take steps to reduce it and preferably eliminate it. However, this brings us into the vexed issue of accountability when it is controlled by organisational leadership. It adds a challenging level of difficulty to the effective delivery of Disability Inclusion.

There is, I believe, a no more compelling argument for taking a professional approach to Disability Inclusion, and certainly when running an ERG.

Care about vs care for

The idea that people will say they care to get a job shouldn’t be at all remarkable, especially if we understand that acting as being caring is a requirement for membership of a community of decently paid folks. It’s a form of what used to be called ‘respectability’. You affirmed commitment to socially acceptable and progressive values. Whether you actually lived them was less important so long as you did not violate them flagrantly in public – and certainly not as a representative of an organisation in a manner that could lead to questions being asked.

We all know hypocrites – people who say high things and do low things. That includes people who take wages for roles that are supposed to deliver benefits to those in need of assistance and aid but do not deliver. The litany of failure and ineffectuality in DEI is well attested. The reason? The job is just too hard? Perform an analysis, figure out what’s so hard, provide developmental support to existing staff, or employ those who are more capable. It isn’t rocket surgery. And yet, after several decades and an abundance of research, failure is still the most common outcome. Why is this?

DEI practitioners and ERG leads still resist upgrading their knowledge and skills. Few actually make the effort to assess their own performances – Are we succeeding? Why not? How can we do better? Why bother if you are being paid AUD$120K a year and nobody is on your case, why raise a sweat if you really don’t care for the people relying on your work?

I think people do genuinely care. But they care about. They don’t care for. They don’t take care of. This isn’t sophistry or pedantry. Care, here, is a verb – a doing word. But it can end at a feeling of the sentiment only, and not progress to effective action that will deliver a beneficial outcome for a person. There’s a lot of this about.

If I sound cranky here it is because I am. As an ERG lead, I gave three and a quarter years to getting outcomes for my members, and I did okay – for a beginner and an amateur. It was very hard work. I had a lot to learn. Since June 2021 I have had the time to commit to researching why Disability Inclusion is so hard. There are a lot of reasons, but none so insurmountable that an honest effort wouldn’t yield good outcomes. I proved this myself.

It’s hard if you want to get results that make a real difference to the people you care about – translating that care about into care for. It isn’t hard if you are content to fail because, despite your ‘best’ efforts, other people aren’t doing their bit – resisting your inducements to be more inclusive and not caring enough. It isn’t hard if you hand off responsibility to make a real impact to other people on the grounds that they should do better to meet their moral obligations. You have informed them, and the rest is up to them? What else can you do? If they fail to act that’s their issue, not yours. 

No! You can find a way to be more effective – to care for, or take care of, the people you care about.

On the Disability Debrief website Alberto Vásquez Encalada wrote an essay called We Wanted to Change the World in which he lamented how Disability Inclusion activists, when they became professionals, ceased to be effective. There’s a snare to earning an income from a passion to serve and it can become a conflict of interest. Activism can conflict with an employer’s culture and become a risk to the benefits of having paid employment and becoming a member of a fortunate minority. That’s a universal hazard which is simply worse when your passion is effective service. Stay committed to service or preserve your income stream?

Think of a person at risk of transitioning from a role committed to service to membership of the symbolic economy committed only to the performance of giving a damn. It can be soul sickening, especially if the transition has been made with no awareness of the reality of the culture entered.

What can you do when your critical source of income corrupts your values, and you cannot walk away? It is far better when you don’t have values to be corrupted, and you can take your wages with no qualms.

We are all familiar with the performance of value assertions not backed up by any meaningful action. Senior leaders soothe us with nice sounding words, affirm their commitment to values and sometimes promise action – and then nothing happens. Did they (1) get distracted? (2) forget? (3) or were they just bullshitting us? Staff in organisations reliably select option 3 on experience.

The sentiment is authentic because that’s as far as it is meant to go. Its not meant to be literal and real – as in actually happening. This is an important insight because it explains routine failure. It is the intended outcome. To think otherwise is to impugn the competence of people who otherwise successfully run large complex organisations. Give them due credit and allow that failure is intended.

Why? They don’t really care. They are aware that social justice is a theme that they should appear to care about, so that is what they do. Hiring a DEI team is essentially about perception management. Everyone (well almost) is happy. Senior leadership is happy because it is managing perception. The DEI team is happy because the jobs are high status and well enough paid.

And the intended beneficiaries? Well, you know, Disability Inclusion is just so damned hard, and we are doing our very best to help you.

Conclusion

Symbolic capitalism is only part of the complex psychology of people involved in Disability Inclusion. It doesn’t apply to everyone who is a practitioner and it’s not the only explanation for inaction or failure. 

Disability Inclusion is hard because we humans are complex. Its goals are morally good, but also aspirational. They are achieved as part of a shared evolution that depends on those who are practitioners being genuinely committed to getting results for those in need. That commitment includes extra effort to learn insights and develop skills. If you, as a practitioner, are not prepared to put in that effort ask yourself whether you are a really a symbolic performer – a carer about. This is no less sincere in protestations of concern. It is just that action does not go beyond performance of that concern and into a focus on delivering genuine benefits to those in need of assistance. 

We Were Never Woke is a timely and compelling argument that merits confronting. It addresses a problem that I think permeates the wide field of human services. It is present in government agencies and NGOs. It is not the whole answer as to why Disability Inclusion is so hard, but it’s a good chunk of it.

Footnote: I sent this post as a draft to a friend and former colleague. Their response was (in part): “Yes, totally relatable and yes truly soul tearing, to know this to be the hard truth …You have captured the harsh reality of (name of employer).”